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Sjogren's Syndrome Support

Open letter:

I recently came across this letter posted on a blog:

http://sjodry.wordpress.com/2013/04/30/an-open-letter-to-those-without-sjogrens-syndrome/

The letter was originally written by someone else in reference to Chronic Illness in general, but someone changed it to fit those of us living with Sjogren’s Syndrome. Enjoy!!

An Open Letter To Those Without Sjogren’s Syndrome..

What I would like you to know is that I have a mostly invisible, chronic illness called Sjogren’s Syndrome. Life as I know it, is unpredictable and changes daily for me. Just because you cannot see those changes or their impact on my daily functioning, does not mean that they are not real.

Most people have never heard of Sjogren’s Syndrome. And for the small number who have, they mistakenly believe that it is only a simple and benign case of dry eyes and dry mouth. In the spirit of informing those who wish to understand…

Please understand that I have limitations. My energy, emotional and pain levels are constantly fluctuating. What you may see when you look at me may look like laziness, indifference or depression. If you visit, I may seem uninterested or distracted while in conversation. I may not have the ability to spend time with you in the same way that we used to. I may have to decline your invitation(s); cancel at the last moment or shorten the length of time I spend at an event.

Please understand the difference between “happy” and “healthy”. When you have the flu, you are temporarily miserable, but I have been sick every day for years. I can’t, nor do I want to be miserable all of the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means that I’m happy. That’s all. I may be tired, in pain or sicker than ever. Please don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to and I will be happy that you noticed.

Please understand the constant emotional toll that chronic illness has on me. I worry about everything. I worry about whether I can continue working or what happens if I can’t. I worry that my progressive medical issues could force me to apply for disability, something that I never want to have to do. I worry about the mounting medical bills. I worry about the battles with my insurance company for medicines or procedures that I need but that may not be covered or have already been denied. I worry about my relationships and the impact that my illness has had or continues to have on them. I worry about how I am perceived by others and whether there’s a chance that I am crazy. I worry about being a good wife, mother, daughter, friend, co-worker and any of the other roles that I have.

Please understand that your well-intended comments like, “But you don’t look sick” are difficult for me to hear. I recognize that your intent was probably to reference the fact that my physical appearance might not indicate that I am ill. The message I receive however, feels like that unless that I “look” sick, that I am not believed. Nor do you have any comprehension of how very hard daily life with a chronic illness is. In essence, it feels as if you have just told me that because I don’t look sick, that I must not be ‘that’ sick.

Please understand that I appreciate your well-meaning advice when you tell me that getting out and doing things will make me feel better. But there is a strong likelihood that it will not, or may cause a flare that will take days or weeks for me to come out of. Please know that if my long-term medicine(s) cannot alleviate my incredible amount of fatigue, that acting on your suggestion of taking a walk or bike ride will not either. But please know that I would like nothing more than to feel up to joining you for those kinds of exercises or outings.

Please understand that if I say I need to sit/lie down; take my pills now that I really need to do it now – it can’t be put off or forgotten just because I am doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand if you are tempted to suggest a cure to me, please don’t. It is not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It is because there is a strong tendency for many well-meaning family, friends and co-workers to all do this. Supplements; diets or unproven treatments could prove to be very detrimental to me and my autoimmune condition, other medical condition(s) I may have or the medications that I am currently taking. I routinely deal with many Specialists and communicate regularly with other Sjogren’s Syndrome Patients – if there were strong, proven and widely accepted new treatments (beyond the medicines that I am currently taking), we would all know about it.

Please understand that getting better from a chronic illness can be very slow. And getting better from an invisible and disabling autoimmune illness might not happen at all. People with Sjogren’s often have a lot of systemic involvement of various organs. Our systems are very often in a state of progressive decline. It may take us a long time to sort out all of our medical diagnosis(es) and a medical treatment regimen that works…if we do at all.

Please understand that you are important to me. I want nothing more than to be that healthy, spirited person that I once was and that you remember. But I am no longer that same person. My new normal changes from day to day depending upon what my symptoms dictate.

Please understand that I may sometimes need your physical assistance and/or your emotional support. But most importantly, I always need your understanding.

4 Likes

Thank you for sharing this!

I've read that before and have shared it with those close to me to give them a sense of things. Thanks for sharing.

I liked it overall. Thanks for checking the post out!

Yes, thanks for sharing. Things are tough and most people around me do not understand.

Thanks for sharing!! I also thought SJS was JUST going to be as simple as dealing with a dry mouth (I don’t suffer from dry eyes…yet) and boy was I WRONG!!!

Thanks again!!

Thank you for sharing this open letter. We can all relate…

I am new to this site, actually i was just diagnosed with Sjogrens about 2 weeks ago.
Knowing that i am not going crazy,had been the biggest relief to me.

1 Like

Glad you’ve found people who understand!

Hi! Welcome aboard. This is the beginning of a journey. We are here to understand, listen and support you. It’s important to know and understand your condition. Once you start researching you will look back and understand so many things!

Know you are not alone. Best wishes.

Arlene http://www.sjogrenssyndromesupport.org/u/arlene
July 30

Hi! Welcome aboard. This is the beginning of a journey. We are here to
understand, listen and support you. It’s important to know and understand
your condition. Once you start researching you will look back and
understand so many things!

Know you are not alone. Best wishes.

Thank you Visit Topic
http://www.sjogrenssyndromesupport.org/t/open-letter/812/10 or reply to
this email to respond.Thank you so much. I have been reading and reading
sone more to inform myself of this condition. My mind is buzzing with so
many emotions. I don’t want this and long for the day when I had enough
energy to REALLY LIVE. I know their are far worse inflictions and I have
never been one for self pity, I just don’t know where to begin.

Thank you for listening,
Teri

I understand. It seems like all our energy sources are depleted… Then
everyone around us is so judgemental.

Let me recommended The Sjogren’s Book published by The Sjogren’s
Foundation. It’s very comprehensive. It has been a very useful tool for me.
You can get it from Amazon.

Hang in there!

Thank you so much for the name of the book. Just hearing back from you, somebody that cares really means a lot. I swear I’m having a worse day of my life and I’m just trying to hang on. Your words of kindness really went a long way. Thank you

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Hi!!! I understand your frustrations, we all go through this roller coaster of symptoms and emotions… After years of multiple hospitalizations, pain, severe asthma, fatigue and other symptoms I was finally diagnosed in 2015. Then the second part of the journey began. Educating myself has been my anchor, since not all health industry professionals are familiar with the condition. I have found myself educating physicians through Sjogren’s literature. I need to know and understand as much as possible so I am not misguided or confused.

I was depressed initially, but therapy has helped. Remember, you are your best advocate, be prepared and stay positive. Stress is not good for us.

Oh, and ask your rheumy about probiotics. Recent studies have found they are good for autoimmune disease patients. They have helped me a lot.

Take care.:hibiscus:

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I have been trying to find some information on secondary Sjogren’s. I asked my doctor if that implied that there was a primary autoimmune disease and he said yes I have been through many blood test and other tests and so far we can’t figure out what it is. Is there any direction that you can steer me in or give me some information or ideas on how I can find out what that primary autoimmune disorder is?

Hi! Primary Sjogren’s is when you get the syndrome as your main autoimmune
disease, meaning, your first. Secondary is when you already have an
autoimmune disease and get Sjogren’s as a derivative of the first one. For
example, many patients get Lupus and then develop Sjogren’s as a secondary
autoimmune disease.

http://www.sjogrens.org/home/about-sjogrens/sjoegrens-faqs

I hope my answer and this article helps you.

Stay strong! Blessings.

Thank you so much for getting back to me. I tested negative to lupus, RA, and many other autoimmune disorders. So far no answers. I wonder if sometimes they never find out the primary disorder/disease.

I was diagnosed with primary SS 2 years ago, but apparently, I’ve had it
for about 10 years.
If you don’t have any other autoimmune disease, your SS is primary, not
secondary. Double check with your rehumatologist or get a second opinion.

Best wishes.

1 Like

What made your doctor believe that the SjS was secondary?

He didn’t say. At that point I was so relieved to have been diagnosed with something just to prove that I wasn’t going crazy that I didn’t even ask him why he believed that it was not primary. I see him the end of November and that is definitely a question I will ask him. thank you.
What is the big difference between primary and secondary?