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How to Talk With Your Family about Sjögren’s

Posted on Thu, Dec 15, 2016

There is a growing body of evidence that rich social support networks are important to overall health, immune function and healing. They improve quality of life and facilitate coping with chronic illness. Conversely, negative social interactions create a stress response that have the opposite effect. Support from family members and close friends can be one of the most important resources for you to draw on when dealing with Sjögren’s. Skillful communication about your illness is key to nourishing the relationships that matter the most to you. This article only attempts to skim the surface of this complex topic. 155698-350x233-talking-with-doctor.jpg

Three characteristics of Sjögren’s create particular communication challenges.

1. Untimely: Sjögren’s is typically diagnosed in the prime of life (40s and 50s), when family responsibilities and careers are in full swing.

While some are lucky enough to have mild symptoms, the majority of patients experience flu-like fatigue, pain and brain fog that demand a new, strict energy budget. Jobs may be lost or hours cut. Frequent medical and dental visits and costly products such as artificial tears strain both schedules and finances. Family dynamics are rearranged by the illness, causing stress, especially if there is little support or strong disagreement about how to meet the new challenge. Single people who become ill may feel particularly vulnerable and alone, wondering how will they ever manage.

2. Uncertain: Early on, many patients have a hard time accepting that this disease will be a lifelong challenge. The sense of loss and fear of long term illness can be profound for both patients and loved ones.

Symptoms may wax and wane for no obvious reason, although they rarely disappear. This can add to confusion and denial. The initial focus of patients and family members is often “how can we x this?” Denial can make adjustment to a new normal even more protracted. Sometimes denial persists for years, until it becomes clear that medications and other interventions cannot bring back “life as usual.”

3. Invisible: Sjögren’s patients tend to look well most of the time, even when feeling quite ill.

The outward appearance of normalcy can make it hard for others to appreciate the severity of your illness. This is made worse when doctors don’t address symptoms such as fatigue and pain that make it a struggle to get through the day. Even though Sjögren’s is quite common, most doctors are not trained to recognize even typical systemic symptoms, and tend to focus on dryness. Some medical websites reinforce this incorrect notion that Sjögren’s is mostly about dryness, rather than a serious systemic disease. When presented with this inaccurate portrayal of the disease, family members and patients become understandably confused. Healthcare providers frequently minimize life-changing symptoms or even become dismissive, leaving the patient feeling powerless or invisible. When family members also fail to understand the devastating impact that Sjögren’s can have, the emotional turmoil can be overwhelming.

As a result of widespread misinformation, patients find themselves needing to become “experts” in their disease. Backed with up-to-date knowledge, it is possible to advocate for care and educate health care providers when needed. An excellent, reliable source of information can be found at the Sjögren’s Syndrome Foundation (SSF) website, www.sjogrens.org. Be sure to read or reread the “About Sjögren’s” section, especially the FAQ. Encourage family members to read it too. It’s really good. It might seem overwhelming and a bit disheartening that you need to learn so much about Sjögren’s, especially early after diagnosis. However, educating yourself will provide essential tools for communication with family, friends and doctors.

Communication with family members

Spouses/partners and other family members suffer grief and loss too. It is important to acknowledge this. Open the discussion early. Ask about their fears regarding the impact of your illness and the uncertainly it creates. Be prepared to revisit this conversation several times. Both you and your significant others will go through loss and grief, although the timing and process is different for each individual.

In spite of your best efforts toward clear, empathic communication with your family, some people may respond with judgment and blame. This often comes as a painful surprise, especially at a time when support feels most needed. Relationship upheaval is typical for people with serious illness. It is important not to blame yourself for the illness, but to develop good self-care with an attitude of deep kindness toward yourself. Attempt to keep lines of positive communication open, but set boundaries to protect yourself from negativity.

While unsupportive family members may eventually shift their stance, the approach of trying to educate them repeatedly after several unsuccessful attempts will only result in unnecessary pain. Just having one or two people in your life who truly “get it” can be enough. Recognize that some people may be good at practical support, but unavailable emotionally. The reverse may also occur.

Practical support tips

Practical support, especially from family members, can go a long way in helping you manage your health. Most Sjögren’s patients can participate in a number of activities, especially when family members take over tasks that are particularly challenging for you to do. It takes some trial and error to learn what you can do without compromising your health. Being a good observer of your unique patterns will help you plan the types of activities and pacing that works for you. Even with careful planning, the unpredictable nature of Sjögren’s will sometimes knock you down when you don’t expect it. It is always good to have a backup plan ready- and soup in your freezer!

Many people are happy to help, but might not ask or could assume you are doing ne if you have a partner or other adults in the home. It can be difficult to ask for help, especially if you are the “can do” type of person. It is good to remember that providing support can be beneficial to both givers and recipients. Sometimes support arrives from people you don’t expect to come through, while those you think of as close friends or family may not provide support.

Examples of useful responses and communication tools

  ♦ If you are unsure of a person’s awareness or interest, you can ask: “I’m not sure how much you know about Sjögren’s- do you want to know more about what’s really going on with me?

  ♦ When someone asks if they can help, try to be ready with a specific request such as stopping by with dinner, running errands, childcare, etc. If you are caught off guard, a good response might be: “Can I get back to you? I could really use help but I am feeling too overwhelmed to think about it right now.”

  ♦ State your limitations and needs, clearly and without apology. If you are too tired to cook, shop or clean, state that and request specific help from household members. For example: “I’m not well enough to do housework right now. Could you please vacuum and clean the bathrooms once a week?” as opposed to the more vague, “I need more help with the cleaning.”

  ♦ Many people go into advice giving mode, offering instant remedies such as the latest diet, various medical regimens, healers etc. This may be motivated by a true desire to help, or it can be a way to distance themselves from your experience. Some possible responses: “Thanks for your concern, I am working closely with my doctor on this,” or “I appreciate your concern. I need to do this in my own way and in my own time. It would be great if you could support my choices.”

  ♦ Dealing with insensitive and judgmental comments, especially if repeated, is difficult. One strategy is to provide the speaker with an opportunity to consider the hurtfulness of their comments, by asking: “Let me understand. Are you saying (repeat hurtful comment)?” The person may back pedal or give their comment more thought. This does not always work. Here are examples of responses to real life comments:

  ♦ “If you just stopped taking all those medications, you would be fine.”

  ♦ Response: “What I’m hearing you say is you think Sjögren’s is not serious enough to require medication.”

  ♦ “If you would exercise/lose weight/eat paleo etc. you would be fine.”

  ♦ Response: “Do you think if I (fill in the blank) my Sjögren’s will go away?”

  ♦ To a more subtle comment insinuating you are not trying hard enough: “I’m hearing you say that if I tried harder that I could do _______ (fill in activity) and still manage my Sjögren’s symptoms.”

  ♦ If responses like this do not work, set boundaries: “It hurts to hear you say this. I am doing my best. Please keep these comments to yourself.”

It can be especially difficult when someone close to you clearly does not understand your illness or support your efforts to take care of yourself. Relationships that were difficult to begin with may become even more painful. Some relationships do not survive the stress of chronic illness. Family members have a limited capacity for emotional or practical support. If you don’t feel supported by those closest to you, being creative about organizing your life, getting support from others, and setting excellent boundaries may be your best strategy. If you are dealing with a close relationship that seems to be faltering, it can be helpful to seek professional support from someone knowledgeable about chronic disease.

Most importantly, know that the news here is not all bad. Many people do step up to the plate, although they may need prompting. Be patient if they are trying to understand; it takes time to adjust and to learn about Sjögren’s. 

by Sarah Schafer, MD and Sjögren’s Patient
Special acknowledgment to Teri Rumpf, PhD and Julia Oleinik, RN for their contributions to this article

This information was first printed in The Moisture Seeker, SSF's member newsletter

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Topics: Depression, Sjogren's, Treatment, coping with sjogren's, Advocacy

Back to School, Back to Sjögren’s Basics

Posted on Mon, Sep 12, 2016

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This fall, as students around the country begin to head back to school and get ready for a new year, the Sjögren’s Syndrome Foundation (SSF) is using this time to write about “back to basics” in terms of managing your Sjögren’s health. In this blog post, we have focused on the fundamentals that can often be forgotten in the busy day-to-day life.

Your medical team:

As most of you know, rheumatologists have the primary responsibility for managing Sjögren’s and usually are the lead of your “medical team.” That is why, when seeing a new physician or any of your many specialists, it is important to establish clear guidelines regarding your medical management, which means clarifying what things that doctor will be managing versus what your rheumatologists and/or primary care physician will oversee. All of these healthcare providers make up your “medical team.” However, it is crucial that your lead physician has all of the information regarding your diagnoses, treatment plans and prescriptions that your entire medical team is providing. This will help the lead physician better manage your case.

It is important to find a doctor who is both a good partner in treating your disease, as well as a good listener. While we know this can be very difficult, it is needed to make sure you are getting the attention your disease requires.

What medications to ask your doctor about:

A Sjögren’s patient’s treatment path should be decided on a case-by-case basis after the potential benefits and side-effects are weighed by patients and their healthcare providers. Currently, a number of different medications are available that might be used to manage symptoms. However, at the present time there is no single medication that has been conclusively proven to slow the progression of Sjögren’s or cure the disease.

Success in using disease-modifying agents to treat closely related disorders like systemic lupus and/or rheumatoid arthritis has led physicians to utilize some of these treatments in Sjögren’s as well. The two most popular choices at present include Plaquenil® (hydroxychloroquine)® (hydroxychloroquine) and intravenous rituximab. The decision to prescribe these specific medications is made on a case-by-case basis after careful consideration of potential risks and benefits.

In addition, many patients also are prescribed corticosteroids as well as prescription products to treat their various symptoms including but not limited to dry eyes, dry mouth, gastrointestinal and joint pain symptoms. As the SSF continues to release Sjögren’s Clinical Practice Guidline Sheets, be sure to ask you physician about the recommend treatment options listed. 

The SSF is dedicated to research into studies that help us better understand the full benefit of these treatments as well as working with companies to help develop new therapeutics that can treat the disease as a whole. The SSF is excited about the current pipeline for treatments that are being investigated by companies, and we continue to be at the forefront at working with and encouraging these companies to move forward.

What to take to a doctor’s appointment:

You should be prepared for a new doctor’s appointment and know your specific objectives for that visit. If this is your first visit to a doctor, it is essential to give them a copy of all your medical records. They will not have time to read it over there during your appointment, but they can keep it on file to review after your first visit.

It is also key to show your physician that you want to be an active participant in your care. Make sure to tell them about all of your daily care. Bringing with you a typed list of medications with dosage (including over-the-counter products and supplements) can be helpful.

In addition, keeping a symptoms journal or diet journal can be beneficial to recognize new or worsening symptoms along with foods that can trigger a are. Click here for the “Tracking Your Sjögren’s Symptoms” worksheet.

And finally, if you have questions for that healthcare provider, bring a list and hand it to them to review. This will help expedite their answers and make sure you get as many answers as possible in one appointment. The healthcare provider can sometimes quickly review a list of questions and tell you which ones are most important to be concerned about and which questions he/she can address at another appointment. Not only will you leave with more answers but your healthcare provider will appreciate your organization.

Find support:

As a Sjögren’s patient, you face the challenge every day of coping with this debilitating disease. Though there are an estimated four million Americans living with Sjögren’s, being diagnosed with an invisible illness can be isolating, which is why it is important to find support and credible information.

Signing up to receive The Moisture Seekers newsletter by becoming a member of the Foundation is your first step! Please share the articles in the newsletter that you find helpful with not only your physician, but family and friends to start a dialog about what you are going through.

Secondly, think about what works best for you in regards to how you can learn and gather information. Patients find different ways to learn how to live with Sjögren’s and here is a listing of just a few:

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Topics: Depression, Sjogren's, Treatment, coping with sjogren's, Immunosuppressant, Rituxan

Living with Chronic Illness: Intimacy & Sjögren’s

Posted on Mon, Aug 01, 2016


handholding_SSF.jpgLiving with a chronic illness, like Sjögren’s, can have physical and emotional affects on a woman's sexuality. However, even with the presence of Sjögren’s, women and their partners can enjoy sexual activity and maintain a state of sexual well being. Be open with your partner about your needs and work together for satisfying intimacy.

Below are the three main reasons of how Sjögren’s can affect a woman's sexuality and tips to help.

Vaginal dryness. Women with Sjögren’s often experience severe vaginal dryness.

  • Vaginal moisturizers are available for daily use and lubricants can be used during intercourse.
  • Vaginal estrogen (hormones) may be right for some women.

Pain. Pelvic pain and pain during intercourse, can have many causes, including Sjögren’s, pudendal neuropathy, and interstitial cystitis. 

  • See your health care provider for an evaluation of why you have pelvic pain. There may not be an “easy” answer, but in many cases a possible cause can be identified and treated.
  • Treating vaginal dryness may improve some pelvic pain. 

Fatigue & mood symptoms. Fatigue, chronic pain and depression can contribute to the daily challenge of living with a chronic illness and affect sexual desire and function.

  • Tell your health care provider if you are feeling depressed. Treating depression may help to improve problems with sexual function.
  • Take care of your Sjögren’s and make time for yourself and things you enjoy. 

This information is from the SSF Patient Education Sheet: Sex and Sjögren’s by Anne E. Burke, MD, MPH

 Thank you to our Conquering Sjögren’s blog sponsor SYLK®.

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Click here to learn more about SYLK®, an FDA-cleared moisturizing lubricant.  

Topics: Depression, Sjogren's, Fatigue, coping with sjogren's, Vaginal Dryness, Pelvic pain, Interstitial cystitis

What the SSF Means to Me

Posted on Mon, Dec 28, 2015

 by, Elizabeth Chase 
 
Elizabeth_Chase_2The Sjögren’s Foundation (SSF) has really been an incredible resource for me. I was diagnosed 5 years ago at age 24 and felt very confused. I had heard of Lupus as my best friend has it, but had no clue about any other autoimmune diseases. When I first searched the word Sjögren’s, the foundation came up. I immediately consumed everything they had to offer and became a member. I then found the Boston support group, and started fundraising for them online. 

When I attended my first SSF National Patient Conference in 2013 I met my life line - the Foundation's Under 40 with Sjögren’s Group Support Group. They are my go-to for everyday questions and are a great support system. Thanks to the Foundation, I have been able to share information about Sjögren’s with my doctors and family. Recently, I've participated in an SSF Walkabout, organized my parents retirement parties as Sjögren’s fundraisers and helped kick off the Boston Sip for Sjögren’s event!

I'm very grateful for the support I have found with the Foundation and the information and resources it has provided me with. This is why I support the SSF! 

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ssf_logoThe SSF was founded by a patient, for patients and the Foundation will never lose that focus. It is because of your generous support that the SSF continues to soar to new heights on our journey to transform a future of hope for all Sjögren’s patients!

So on behalf of the SSF and our volunteer Board of Directors, I want to thank each of you for sharing your story, attending our events, volunteering your time and donating to our programs. Without you, we would not be able to share the amazing successes that we were able to achieve in 2015 and build on this momentum in the New Year. 
 
Wishing you and your family a Healthy and Happy New Year!
 
Sincerely,
Steve_Sig
 Steven Taylor
Chief Executive Officer 
Donate to Research
 
We encourage you to comment below & share what the SSF means to you. 

Topics: Depression, Sjogren's, coping with sjogren's, National Patient Conference

Patients Sharing with Patients: Holiday Tips

Posted on Mon, Nov 30, 2015

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The holidays can be a very happy and joyous time reuniting with family and friends, but it can also be a very stressful time, especially when living with a chronic disease like Sjögren's. 

Holiday stresses and winter weather can have a negative effect on a person's symptoms and living with Sjögren's means learning what your new normal is. This is why it's particularly important during the busy holiday season to make sure you listen to your body and do not neglect your mental or physical health. 

The SSF knows that some of the best tips come from patients, which is why we want to hear from you about how you cope with additional stresses and symptoms during this time of year. 

  • How do you manage fatigue with a busy holiday schedule?
  • What is your best tip to make holiday traveling easier?  
  • What advice would you give to a fellow patient dealing with the depression during the holidays?
  • How do you explain Sjögren's and what symptoms you're dealing with to family & friends?
  • What cold weather problem do you find the most difficult when managing your Sjögren's (such as a Raynauds flarenasal drynessdry skin or other symptom) and how do you effectively cope? 

Just as one product may work well for one patient but not another, you will need to discover what coping techniques works best for you. Please comment below and share your suggestions.

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On behalf of the SSF family, we wish you a healthy and joyous holiday season! 

Topics: Depression, Dry Nose, Fatigue, Dry Skin, Top 5 Tips, Dry Nails, coping with sjogren's, Flare,

How I Found a New & Happier Life with Sjögren’s

Posted on Thu, Oct 15, 2015

My Sense of Humor is Dry, and so is Everything Else! I’ve always had a dry sense of humor coupled with an optimistic personality. But I must admit, when I was diagnosed with Sjögren’s, it took me quite a bit of time to go through the grieving process and create a bold life with my sense of humor intact.

I love those stories about people who are able to accept the diagnosis and immediately say, “Sjögren’s, I may have you but you will not have me.” That was not my experience. In fact, I found that that more I challenged my Sjögren’s, the more it did have me!

JanetLike all of you, I now can look back and pinpoint when I was presenting early Sjögren’s symptoms. My early symptoms began in 1997 as ongoing sinusitis and exhaustion. For a decade, symptoms escalated until I was hospitalized for two weeks.  Nine-months after my hospitalization I was finally diagnosed with Sjögren’s January 2007.

I was relieved to have the diagnosis and excited to look Sjögren’s in the face and tell it, “You will not have me! I am a fighter, an optimist, a model patient and I will knock you down.”

Although it turns out a fighting attitude was not what I needed and it took three years for me to find my way after my diagnosis. I was fighting Sjögren’s to regain my “old self” and my previous life. What I needed was to love and embrace my Sjögren’s in order to see my “whole self,” accept my previous life as a point in time, and find my “new self.”  After all, I was young with a lot of life in front of me. It was time to explore new aspects and add to the journey.

Here are my big revelations about what worked for me. Perhaps you can find some tips for yourself or for a newly diagnosed friend.

I embraced my disease instead of fighting it
Instead of imagining an internal army kicking the sh** out of Sjögren’s (as my friends who had successfully killed cancer had suggested), I found the imagery of embracing my Sjögren’s to calm it down was what finally did the trick. 

I think of my Sjögren’s as a small girl who is tired and acting out (and yes, I recognize the “inner child” similarity here). I finally realized that I was already attacking myself and launching emotional attacks to combat Sjögren’s was perhaps adding fuel to the fire.  So I tried the tender approach. To me, this was different than the adage “be good to yourself” or “be kind to yourself.” I imagined that the little girl dwelling inside of me was a separate person that I needed to care for. She is not mean or weak, she is in fact strong and confident, so she requires special attention.

If you are a person who tends to take care of everything and everyone around you, then this imagery might work for you too. After a few years of practicing this imagery, I now can take a short-cut and just “be good to myself.”

I didn’t make my world too small
There have been times when I focused mostly on Sjögren’s and what I could not do.  I found that my world started shrinking and became quite small. That was not the life I wanted so I had to train myself to think of all the things I CAN do. Along the same lines, I started asking the question “Why Not?” instead of “Why.” Try it, it’s a good practice!

Beauty & Nature Matter
I moved Sonoma, CA wine country in order to have natural beauty surround me. Not everyone can pick up and move, but everyone can take a nature walk. Be still in nature and soak in what you find beautiful.

I feel the same about the beauty and healing powers of music and art! I listen to new music and dance while making dinner almost every night. 

Work and productivity
For years, I managed my work time and stress by consulting on a project basis.Two years ago I co-founded a software company and was concerned about the workload, but I have been fascinated at how well I feel! I don't work the crazy hours of my youth, and I don't see that as a shortcoming.  I know my experience and wisdom (no longer sweating the small stuff) is more valuable to the company than extra hours. Even though I have periods of exhaustion, I’m actually feeling the best I have ever felt with Sjögren’s. 

Because I am challenged and doing something I believe I’m good at, I believe my Sjögren’s is better controlled. I do have to manage stress and discipline myself to not “power through” things, which makes me feel worse. But this is all part of taking better care of myself and knowing the right work-life balance. You might find that managing your best work-life balance can help you too!

“No” is a complete sentence and it’s ok!
If you are a person who has taken care of many people and many things, it’s time to look at that. Sometimes it’s a good thing and sometimes it crosses over into something else. Try letting go of the “something else.” It’s also time to let go of feeling bad about it! 

Be a Good Friend
My friends have had my back when I was not doing very well.  In fact, a couple of friends certainly gave more than they received for a few years. One day I asked myself “Would you want to be your friend?”  I didn't like the answer so I vowed to be a good friend to those I love. In order to do that, I had to relinquish a relationship that took too much negative energy so that I had positive energy for those who lifted me up. I still make new friends, but I manage my energy and time well.

Give Back to Something
Find what is important to you and give some time to it. Although make sure you are using positive energy and that you’re not pushing beyond your limits. I have several community things I support, but being on the Board of the Sjögren’s Syndrome Foundation brings me great satisfaction.  It combines three things for me. First, my desire to know more about the disease. Secondly, my desire to speed research for a cure. Finally, my desire to help others understand and deal positively with their Sjögren’s

I have been amazed at how much the SSF actually accomplishes on our behalf and I know we will accomplish our 5-Year Breakthrough Goal of shortening the diagnosis time 50% in 5 years. I am proud to be part of making that happen for our community! 

Sleep, Exercise, Food & Wine
Sleep is my best tool! I go to sleep when I’m tired and wake up when I’m ready. And exercise is something that always makes my joints feel better. 

I love food and wine. I feel my best when I eat an organic diet of fruits, vegetables and proteins, exercise daily and steer clear of carbs and sugar (which includes wine). But I live in wine country for goodness sake so I’m going to drink wine. I do so many things “right” so that I can enjoy a glass of wine when I like (preferably a really good Pinot Noir, with really good friends).

Today, I have my Sjögren’s in steady order by taking pretty good care of myself and making sure I balance all things in my life that define, for me, a bold life. Now I work smart and play smart. I do have daily symptoms that I stay on top of, but I simply accept them as part of my life now. Just like aging. And menopause. Good thing I’ve got my sense of humor back to deal with that!

This article was first printed in the The Moisture Seekers, SSF's patient newsletter for members.

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PS: I lifted the first line of this article from fellow SSF board member Dr. Herb Baraf, who at our last Board of Directors meeting stated, “The SSF, even our sense of humor is dry.”  Funny man!

Topics: Depression, Sjogren's, coping with sjogren's, Advocacy, 50in5: Breakthrough Goal

10 Lessons From A Great Teacher

Posted on Fri, May 15, 2015

by Alida Brill 

Most of us have memories of a teacher who influenced our lives. I certainly do.  But my greatest teacher has been chronic inflammatory autoimmune disease. Obviously, I use the word great here not as in “wonderful” but as in “of extraordinary importance and weight.”

Support_SSFA few years ago a young woman approached me after a talk I gave about living with chronic disease for my entire life (well, from twelve forward, so close enough). She wanted to know precisely what I meant when I said: At the end of it all, it really hasn’t been all bad.

Understandably, she wanted to know what wasn’t all bad about always being unwell.  She had been recently diagnosed with Lupus and saw the life she had known and valued disappearing. She was overwhelmed by the unknown and confused by conflicting medical opinions about treatment options. I said a few things, likely not useful, but her question stuck with me.  Precisely what do I mean when I say that?

During virtually all of last year I was sidelined from doing almost anything as I went from one autoimmune crisis to the next.  The only thing I could do consistently was to let my mind spin out of control, which often took me to destructive destinations.  That young woman kept appearing in my daydreams.  If I were to offer anything useful to others who live on this planet of chronic illness, I had better come up with something to back up the platitude. At first I thought the deeper meaning was that I pay more attention to the things that count in life, and less to those that don’t.  But many of us do that, whether we’re ill or not.  I spent some time thinking about how to fashion a life of illness into a life of lessons.  Here is how illness itself became a great teacher to me, and the ten lessons I took from it. 

1. How to Hold Your Tongue

People often say ridiculous things, especially to the sick.  I’ve heard my share, and I’ll bet most of you have as well. Sometimes it’s hurtful -- sometimes strangely amusing.  I’ve learned not to take up every verbal challenge, not to inform others how wrong they are.   There are those who are filled with bewildering misinformation but persistently engage in arrogant advice giving. I have dropped acquaintances or friends who could not find their way to compassion or understanding. Most of the time, I decide a solid friendship is worth preserving. I can usually separate thoughtlessness from cruelty. I also learned that the childhood rhyme: sticks and stones can break my bones, my words will never hurt me is a lie. Words can wound. Chronic disease has taught me to hold my tongue, still I use this phrase frequently (without hostility): Ouch! What you just said really hurt.

2. How to Be With Yourself

… And not by yourself.   When we women walk into most restaurants on our own (other than diners or fast food chains) we’re usually asked: “Will you be dining alone tonight?” Or, the even more grating: “Only one tonight?” I often dine solo for many reasons, but I’m not alone: I’m with myself.  It is crucial for those of us with chronic disease to cultivate strong friendships – with ourselves. To be with yourself in your own company is essential to a feeling of independence and empowerment. There are times when a flare doesn’t make me that great a companion – except to myself!  Loneliness is not healthy, but solitude can refuel your soul.

3. How to Need Without Becoming Needy

I’ve been unwell for so long I could write an entire book about how people have left me.  Chronic illness wears friends down, repels spouses and lovers, exhausts friendships and fragments intimacy.  But this doesn’t mean we’re not entitled to ask for help.  Be brave enough to say you need some assistance and strong enough to accept it if the person can’t or won’t come up with it. You are not a failure. You are not pathetic. There are people who can and will assist us.  Keep your needs in perspective and in balance.

4. How to Forgive

First, forgive yourself. With chronic disease, we are not always reliable.  We make plans and then cancel.  We try to do a good job at work, as a parent, as a spouse, but it doesn’t always stack up to an A+. Don’t berate yourself.  We’ve done the best we could and we can keep trying to improve. Keep in mind that days ahead may not be as awful as the ones where we couldn’t go through with a project or a commitment. 

Second, forgive others who let us down. Promises are words of good intentions.  Sometimes they are not fulfilled, but everyone deserves a second, third, and perhaps even a fourth chance.  Remember that even the well and able-bodied can become overwhelmed.

5. How to Listen

Illness has taught me to listen carefully to physicians as they are speaking rather than anticipating what they are going to say next. A wise doctor told me: All facts are friendly. He didn’t mean that all medical facts were pleasant or joyful, but that information is power.  You can’t make a decision about what to do, or not do, or what to ask of another doctor if you’ve not bothered to take in what has been already given to you. There are times when we want to interrupt doctors; we have so many questions and they have such limited time.  But letting doctors have their say too is the best first step to establishing patient-doctor dialogue.  Don’t make assumptions until you’ve had time to digest and consider.

6. How to Challenge Authority

Doctors have high status in our culture.  Even if you’re a person with a distinguished title or career, the power of doctors trumps most of us.  Sometimes a doctor is wrong about what’s best for you, or what you can manage at a particular time. There’s a way to challenge a medical authority without blowing up the relationship.  This is best done after you’ve had some time to formulate questions and your concerns.  Doctor-patient relationships are similar to all other important ones and anger and accusation virtually never take us to a healthy place.

7. How to Try Again           

… And again.  I’m not sure there’s a better teacher of resilience than chronic disease.  I have often wanted to give up, to spend my time whining, to shift my gear into the “stall and wallow mode”.  But I haven’t because life is out there asking us to challenge it -- and our diseases -- urging us to get up and get going to progress in our own fashion. Face the reality of your disease but just as strongly acknowledge you are still equipped to keep attempting the all but impossible.  In the words of Samuel Beckett: Try Again. Fail Again.  Fail Better. 

8. How to Hope

Well or unwell, if we don’t have hope we’re doomed.  Discouragement and chronic disease are best friends to each other. I’ve become almost euphoric at the prospect of a new drug or a respite from flares, and then fallen quickly into a ditch of despair when the drug doesn’t work or when it makes me sicker, or when the containment of disease is short.  For those who have spiritual faith, the job might be easier, because faith is said to fuel hope.  But you don’t have to profess a particular religious belief in order to hope. Hope means the belief in a better moment, a better cycle, a better result. 

Hope is the glue of survival.

9. How to Endure Loss

I have endured loss by embracing it.  It’s not for everyone, but I think it’s worth a try.  Face the reality of what’s gone and can’t be retrieved – a relationship, a job or career, financial security, an independent lifestyle – for many of us it’s a long list.  Remember all that was given to you when you had these things or persons in your life. Find a place within your awareness where they can still reside, undisturbed.  But at the same time do not long for a return of what can’t be reclaimed.  Find new things to claim and new ways to enrich your life.  When my mother was very old (over 90) she could no longer walk in her garden, but she could see it from her window and would recall the days when she worked in it. Undoubtedly she missed those days, but kept her garden by finding a new way of being with it.

10. How to Embrace the Unknowable Future

Here we’re not different from anyone else.  Nobody can predict the future. As an unwell woman, I’ve been particularly anxious about my future.  Where will my disease choose to go next?  What will be my further limitations?  What if the drugs don’t work at all?  What if I run out of resources? And on and on and on.  But we’re all in this lifeboat together. Particularly as we get older the worries increase about how to navigate illness.  If we’ve been sick from childhood, we feel prematurely old.  It’s good to step back and take in the moment of living as it is, and to understand that we can only find our way to the next moment in our life and then the next, and the next. We can’t figure it all out at once.

Would I choose this life again? No. I think about the many who suffer, and I hope there will soon be cures and real remedies for us all.  Autoimmune disease, in all its manifestations, is an area of medicine for which I want more attention, more research dollars, more independent drug trials, and more splendid young doctors (especially women).                                                                                                            ©2014 Alida Brill

 This article was first published in The Moisture Seekers, SSF's member newsletter.

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Alida Brill is a writer in New York City.  She has atypical Granulomatosis with Polyangiitis (formerly known as Wegener’s). Her last book, Dancing At the River’s Edge:  A Patient and her Doctor Negotiate Life With Chronic Illness, (Schaffner Press) is a dual-memoir written with her long-time doctor, Michael Lockshin, M.D. She is an activist and advocate for girls and women with autoimmune disease. She is currently at work on a new book, Dear Princess Grace, Dear Betty: The Memoir of a Romantic Feminist, scheduled for publication by Schaffner Press in Winter 2016. 

Topics: Depression, Sjogren's, coping with sjogren's

13 Types of Sjogren's Fatigue

Posted on Thu, Apr 17, 2014

13 TypesThis is a revival of an essay I wrote ten years ago, originally entitled 11 Types of Fatigue. I’ve been asked by the Sjögren’s Foundation to give it new life. I thank them for the opportunity and hope that in the ten years that have passed since the original essay, there is increased acknowledgment of fatigue as a major factor in Sjögren’s. I’ve decided to add two new types of fatigue to the list, which is by no means meant to be exhaustive.

A quick update: The friend mentioned below was my first friend with Sjögren’s and as such, has always been very special to me. We still speak in a kind of shorthand, as I do with most if not all of my Sjögren’s friends. The friends I have made over the years are the only good outcome of this disease. As a group, we understand what it means to say that we are ‘fine’.  We know that when we say we are “tired”, it means really tired, i.e. that something is going on, something out of the ordinary, beyond the everyday feelings of fatigue. ‘How are you?’ is not a question in our culture. It is a greeting. As such, it deserves a real answer only in those circumstances where there is an understanding that the person asking truly wants to know.

For those of you who haven’t seen it, here is most of the original article with a few additions and revisions:

"How are you?" I asked a friend who has Sjögren’s. "Tired," she said, "how are you?" "Tired," I replied, knowing we understood each other. We were talking about a special brand of fatigue. Later that day, a friend who did not have Sjögren’s asked me the same question. "How are you?" she said. "Fine" I responded, thinking it was the simpler way to answer a basically rhetorical question.

Not everyone with Sjögren’s suffers from fatigue, but many of us do. According to a 2012 survey done by the SSF, fatigue was the third most prevalent and disabling symptom of Sjögren’s. Fatigue has been a problem more disabling than dry eyes or dry mouth for me. I long for normal energy and the ability to sustain activity, any activity. I long for the kind of fatigue that gets better with a good night's sleep. I want to be able to do things spontaneously. I wish I did not have to pace myself or plan rest stops. I wish that I could just get up and go, but, reluctantly and somewhat resentfully, I know that fatigue is a permanent part of my life. Having decided that if you must live in a particular landscape, you should learn the subtleties of the territory. I've come up with the following subtypes. Your experience may vary:

Basic fatigue
1. This is the inherent fatigue that I attribute to the inflammatory, autoimmune nature of Sjögren’s. It's with me all the time. It differs from normal fatigue in that you don't have to do anything to deserve it. It can vary from day to day but is always there. For me, there appears to be a correlation between this kind of fatigue and sed rate (ESR). When one goes up, so does the other. I don’t know how often this phenomenon occurs. I could also call this my baseline fatigue, which fluctuates and gets better or worse. All of the following are superimposed on this basic fatigue.

Rebound fatigue
2. If I push myself too far and ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e., do too much one day and feel it the next. If I push myself today, I very likely will have to cancel everything tomorrow. An extended period of doing more than I should will almost certainly cause a flare.

Sudden fatigue
3. This 'crumple and fold' phenomenon makes me resemble a piece of laundry. It comes on suddenly, and I have to stop whatever I'm doing and just sit down (as soon as I can). It can happen anywhere, at any time. It is the kind of fatigue that makes me shut off the computer in mid-sentence. It is visible to those who are observant and know what to look for, even though I make gargantuan efforts to disguise the fact that it is happening.

Weather related fatigue
4. Not everyone has this particular talent, but I can tell that the barometric pressure is dropping while the sky remains blue and cloudless. I feel a sweeping wave, a malaise, that sometimes lifts just after the rain or snow has started. Likewise, I know when a weather front is moving away, even while torrents of water are falling from the sky. I feel a lightening in my body and begin to have more energy. This kind of fatigue is accompanied by an increase in muscle aches and joint pain.

Molten lead phenomenon
5. This fatigue is present when I open my eyes in the morning and know that it is going to be a particularly bad day. It feels as if someone has poured molten lead in my head and on all my limbs while I slept. My muscles and joints hurt, and doing anything is like walking with heavy weights. It is often associated with increased symptoms of fibromyalgia and sometimes helped by heat and massage.

Tired-wired
6.Tired-wired is a feeling that comes from certain medications, such as prednisone, too much caffeine, or too much excitement or perhaps it is just a function of Sjögren’s. My body is tired but my mind wants to keep going and won’t let my body rest.

Flare-related fatigue
7. Flare-related fatigue is an unpredictable state of increased fatigue that can last for days or weeks. It may be caused by an increase in disease activity or an undetected infection. If the latter, it either resolves on its own, or eventually presents other signs and symptoms that can be diagnosed. Additional rest is essential to deal with this kind of fatigue, but rest alone will not necessarily improve it or make it go away. Once a flare begins, it is impossible to predict where it will go or how long it will last.

Fatigue induced by other physical conditions
8. Fatigue related to other physical causes, such as thyroid problems or anemia superimposed on Sjögren’s. This kind of fatigue makes you feel that you are climbing a steep hill when you are really walking on level ground. It resolves once the underlying organic condition is diagnosed and treated. Thyroid problems and anemia are both common among Sjögren’s patients, but many other kinds of fatigue may be superimposed.

Fatigue that impairs concentration
9. Fatigue that impairs concentration precludes thought, makes me too tired to talk, think or read. Fatigue robs me of memory and encloses me in a fog of cotton wool so thick I can't find my way out until the fog miraculously lifts. For me, brain fog goes hand-in-hand with other kinds of pernicious fatigue.

Stress, distress, anxiety or depression
10. Stress, distress, anxiety or depression all can create a leaden kind of emotional fatigue that can be as exhausting as one due to physical causes. Although some people do not associate their increased fatigue with emotional states, many are aware of the effects of increased anxiety and depression, even if they cannot control what they feel. Intense emotion is very draining. Stress, anxiety and depression all are known to disrupt sleep.

Fatigue that comes from not sleeping well
11. Some people with Sjögren’s have trouble both getting to sleep and staying asleep. Some wake up in the morning feeling as if they had never slept at all. Many aspects of Sjögren’s affect sleep: being too dry, in too much pain or malaise; multiple trips to the bathroom, the need for water or to put in eye ointment all deter a good sleep. Lack of restorative sleep increases fatigue.

And two new ones:
Fatigue that comes with normal aging
12. I’m old enough for Medicare now and my friends are more tired too, although they seem to be able to do two or three or even four times what I can do on any given day. In fact, the gap between what they can do and what I can do just seems to be growing, despite my best efforts. It’s been a long time since I tried to keep up, but it still hurts that I can’t.

Chronic Illness Fatigue

13. Fatigue that comes from a chronic illness that just won’t quit. We’ve all heard the expression “sick and tired of being sick and tired” and that phrase truly captures what many of us feel. I would take it one step further. There’s a fatigue that comes with the uncertainty of a chronic disease. It’s a debilitating fatigue born of never knowing what will come next. The chronicity of Sjögren’s can wear me down and I have to make special attempts not to let it. When these attempts don’t work, I wait a while and try to find something else that distracts me from my illness.
 
It's difficult to explain the unnatural quality and intensity of this fatigue to someone whose only experience has been with what is normal. We're not talking about the same stuff. It’s apples and artichokes. Sjögren’s fatigue is pervasive. It assaults everything I do. There isn’t a part of my life that hasn’t been touched by it. It is there even on my happiest days.

Because people don’t understand, it’s often misinterpreted. "Is it depression?" a health care professional who didn't know much about Sjögren’s asked me. I tensed. Was he saying it was all in my head? I began to get angry but then gave him the benefit of the doubt. I put my first reaction aside and decided he was trying to understand. I was relating something outside his frame of reference, and he was attempting to find a point with which he could identify.

When you describe Sjögren’s fatigue to someone who has never experienced it, you are asking him or her to think outside the box. You want them to understand an experience that is common to those who have Sjögren’s and many other autoimmune diseases but rare otherwise. Perhaps their first reaction will be negation or denial. While it’s always difficult to encounter expressions of disbelief, it is not uncommon.  I tried to see it as an opportunity to educate.

"No," I said to the doctor who asked about depression, "think of it as a never-ending flu that varies in intensity but never goes away." He grimaced.

This article was first published in the November/December Issue of The Moisture Seekers. Suggested reading:The Sjögren’s Syndrome Survival Guide, by Terri Rumpf, PhD, author of 13 Types of Fatigue article, and Katherine Moreland Hammitt, SSF Vice President of Research, this SSF best seller is often referred to as a “support group in a book."

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Topics: Depression, Symptoms, Joint Pain, Fatigue, coping with sjogren's, Chronic Pain, Flare,

Patients Sharing with Patients: Tips to Cope with the Winter Blues

Posted on Thu, Jan 30, 2014

Weather can affect everyone differently, and some people prefer colder temperatures. Although when living with certain chronic illnesses, like Sjögren's, winter weather can have a negative effect on a person's symptoms, such as joint stiffness or dry skin, and also on a person's mood. 

Learning to live with Sjögren's is learning what your body's new normal is- this includes taking care of both your physical and emotional symptoms.  

Recently the Foundation has received a lot of questions about this topic and since some of the best tips the Foundation knows have come from patients, we want to hear from you!

winter blues party
  • What cold weather problems do you find the most difficult when managing your Sjögren's and how do you deal with them effectively?
     
  • When the winter blues hit, how do you manage to say positive when also coping with Sjögren's?
     
  • What advice would you give to a fellow patient dealing with the depression?
     

Just as one tip may work well for one patient but not another, you will need to discover what tips and coping strategies work best for your body. That is why tips and suggestions of all kinds are welcome and encouraged as a way to help fellow Sjögren’s patients.

Please comment below and share with us what you would suggest.

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Topics: Depression, Symptoms, Sjogren's, Joint Pain, Fatigue, Dry Skin, coping with sjogren's

Today, This is My Life with Sjogren's... AND I LOVE IT!

Posted on Fri, Aug 09, 2013

The following is post from a guest blogger, Richard a male SSF Support Group Leader in Idaho. We asked Richard to write about what he does to successfully cope with Sjögren’s.  

No, not the Sjögren’s, my life silly, and I believe in living it well and fully. I am a Sjogrenite, a father, a friend, a volunteer, master (or slave) to my yellow lab, a Harley rider, a hunter/sport shooter, a country swing dancer, a fisherman, a Vandal (University of Idaho’s mascot), a neighbor and am proud of all of these. But most of all, I’m proud to say that I live my life the way I want to even after having been diagnosed with SS (Sjögren’s Syndrome) 12 years ago. When something challenges me, my thought is "bring it on!" I’ll find a way to meet and, and perhaps, even beat you in a positive way.

So how do you do this when you hurt unbearably some days, wonder when nasty little “occurrences” of a myriad of new symptoms will ever cease, and are just plain tired of SS’s poop? I don’t know how you do it, but here is how I do.

Richard and Mitchell Bliss 3

First of all, I acknowledge that “today is the healthiest I’ll ever be”. Now that is a mental attitude that I must adopt because it is TRUE! However, with that said, how can I make the symptoms and my attitude the best?

I’ve decided that I need to be positive about my disease or I’ll never feel good physically or emotionally. I give myself a 20 minute window to be “pissy” (on the occasion that I have those feelings) about my hurts, issues, lack of energy, lost ability to mentally associate things, lack of full mobility, etc. I don’t like being around folks who are always negative and grouchy, so why would I want to be one of those? So that’s it, I start thinking about the things and people I really enjoy and appreciate, then my time is up! Most importantly, I think “why would I want to waste even a half a day of my life?” The answer is simple, I don’t and I won’t. There are way too few left at this age and if I were younger, I’d still feel that way.

Exercise is a VERY important part of my life. All literature regarding chronic illnesses and/or aging illustrates this point with an explanation of how it helps us immensely. So how do I get around the pain, etc.? I set my alarm for 5:15am three days a week and go to the local YMCA to do a workout in the pool that works on my entire body. The workout is 50 minutes long. Doing exercises in a pool is a lot easier on the joints and muscles. Plus, I treat my aches to 10 minutes in the Jacuzzi when I finish. I really dislike getting up that early most mornings along with the discomfort, okay- pain, but it's not about my likes, it's about my body’s needs and my future. I also do a workout at home 2-3 days a week in between the pool visits. I stretch, use lighter weights, elastic bands and the floor. I do all this not because it feels “good,” but because I know that it helps my body and because I can control my mind, at least in that regard- where it goes some days when I need it most, I have no idea.

I also believe in having fun and laughing. The world and my mind are my playground. I still do most things I did before all the various SS effects came storming my way about 8 years ago. Granted, I don’t do them the same way- I have modified them to fit my capabilities today. And I keep adjusting them year to year as my symptoms change (worsen). That means I still have the joy of participating in them, rather than being sour that I can’t “climb that hill anymore” (literally and metaphorically). I’ve helped my family and friends to understand a bit about these effects of SS so that they can enjoy time with me and vice versa.

I believe in teaching and inspiring as we go through life. And the way we live with SS is the “Professor” in all of us.

• Do we understand that we are not the only ones who suffer because of our condition?
• Do we see that our loved ones and friends no longer have us the way they were used to?

We are not as eager to get up and go or we simply cannot do some particular physical or mental activity anymore, or at least, not in the same manner. It is important that I recognize this so I can help them understand. This helps us create alternatives so we can still enjoy special times together in whatever we do. It is also very important to me that I be a positive person while we engage in these wonderful times together.

I have always had the attitude “Why Not Me?” I don’t think I’m special in any way that should exempt me from having a disease. Someone has to have them, if for statistical purposes only! I’ve shared with my sons that perhaps I was chosen because I am a very tough and strong willed person. Maybe I can handle it, or learn to, better than others. Whatever the reason, I have it and I’m okay with that.

A younger lady doctor, who was one of my most ardent advocates, convinced me to use pain medication when necessary, which was something I was quite opposed to. She was a saint for spending so much time with me regarding all my health issues including the pain. Being in extreme pain frequently is one of the toughest things we face. Oh how we cherish those days when the stars align in our favor and we have a day, or even a few, when we wonder if our SS is getting better. Sjögren’s doesn’t give us too much time to contemplate this crazy notion before it thumps us on the forehead and awakens us from that dream. I now use pain medication when I really need it and during times when I can feel symptoms coming on that would have put me down for a while. I have accepted that for me these meds are viable and can help me salvage more quality time. And I love having time just like everyone else!

It is important for me to be active in the things I like and enjoy. This gives me a chance to use and try to preserve what’s left of my mind and memory. Teaching and supporting others are two of those. I volunteer with organizations and the SSF that allow me to do so. It is very good for my mental attitude to be engaged in activities that can help others. I truly enjoy being a part of these. So I guess it is somewhat selfish too. And selfish is okay with me, we have to acknowledge that we all have special “things” we must do for ourselves. Sometimes they may seem simple to others, but just sitting or lying down a couple times a day is difficult for us to do. Why? Well for me it is related to my upbringing and age. We just went all day until bedtime because there was always something that needed to be done and you didn’t take a break until it was accomplished.

Having SS means we need to change the rules that fit us prior to that time. We need to give ourselves permission to do the things that can assist us. In addition to taking real breaks, I try to see my massage therapist as often as I can afford it. I believe massage is one of the most beneficial treatments for my body, mind and soul. Although I’m not certain how I know this since I usually fall asleep between the more painful spots!

George Strait, the country singer (I’m a Westerner, so I like country music) has a song entitled: “Here For A Good Time.” It speaks very closely to my way of living my life.

I’m not gonna lay around and whine and moan
Because somebody done done me wrong
Don't think for a minute that I'm gonna sit around
And sing some old sad song
I believe it's half full not a half empty glass
Every day I wake up knowing it could be my last
I ain't here for a long time
I'm here for a good time
So bring on the sunshine
To hell with the red wine
Pour me some moonshine
When I'm gone put it in stone
He left nothing behind
I ain't here for a long time
I'm here for a good time
Folks are always dreamin' bout what they'd like to do
But I like to do just what I like
I'll take the chance, dance the dance
It might be wrong but then again it might be right
There's no way of knowing what tomorrow brings
Life's too short to waste it
I say bring on anything.
I ain't here for a long time
I'm here for a good time
So bring on the sunshine
To hell with the red wine
Pour me some moonshine
When I'm gone put it in stone
He left nothing behind
I ain't here for a long time
I'm here for a good time
I ain't here for a long time
I'm here for a good time

Maybe they will put on my stone: “He had Sjögren’s and he left nothing behind.” Yep, I’m a Sjogrenite and so much more. I'm proud of the fact that it will never beat me!

-Richard 
Meridian, Idaho

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Topics: Depression, Sjogren's, coping with sjogren's, Advocacy, Men with Sjogren's

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