An Open Letter To Those Without Sjogren’s Syndrome

I recently came across a site: http://notdoneliving.net/blog/openletter-id which posted an Open Letter to those without Chronic Illness. I noticed that there are several adaptations to the letter that people have made with respect to their various specific medical conditions. Of course I decided that I should immediately create an Open Letter To Those Without Sjogren’s Syndrome. So for any of my Sjoggie friends who may feel the need to share this message with someone, please feel free:

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.

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About vitalsignspgh

Sandy Burkett is the Creative Engineer, President and Owner of Vital Signs. Vital Signs is a certified Native American/Woman-Owned custom sign and graphics company located in Carnegie, PA.
This entry was posted in Open Letter To Those Without Sjogren's Syndrome, Uncategorized and tagged , , . Bookmark the permalink.

34 Responses to An Open Letter To Those Without Sjogren’s Syndrome

  1. Jan says:

    I just found and subscribed to your blog today….. and I have to say I love this! This article is so right on, and I would like to post it on Facebook. I also want to forward it to just about everyone I know, but I think they’re all sick of hearing from me right now, because I’ve been sending a lot of stuff for Sjogren’s Awareness month. So I guess I’ll wait a while before I pester them again, but this is perfect! Thank you!!

    • vitalsignspgh says:

      So glad you found me. I know what you mean about sharing..I have to be careful or my email messages will quickly be deleted..so much enthusiasm to share Sjogren’s Info 😀

      • Jan says:

        It’s true….. I want to share so much information, so people understand what’s going on with me. But, they don’t want to keep reading all this ‘junk’. So, it’s great to find people who ‘get it’… don’t need any explanations. Thanks so much for sharing your life…. it truly makes a difference!

  2. loli godoy says:

    Hola soy española y una enferma del Sinrome de Sjógren,esta carta es realmente genial,me encanto y emociono leerla,ademas de comprender todo,ya que cada dia paso por ello.Gracias.Saludos desde España.
    Hello I am Spanish and a patient of the Sinrome de Sjógren, this letter is really brilliant, am charmed with and get excited to read it, beside understanding everything, since every day I happen for it. Thank you. Regards from Spain.

    • vitalsignspgh says:

      Hola! I am so glad that you liked the letter. I think that it is often difficult for friends or family to understand what we go through every day. I hope the letter will be helpful to you.
      Take care.
      SjoDry

  3. Patty O says:

    Excellent, excellent letter. Very nicely stated, yet gets the point across. I’m going to reblog if you don’t mind. I sincerely hope that a certain few people will read this!!!

    My (not so nicely) blog post which was meant more for a support piece to fellow Sjogies is here: http://athankfullyimperfectwoman.com/2013/06/20/do-what-you-can-do/ – I hope you like it!

    • vitalsignspgh says:

      Absolutely Patty. That is why I wrote it. I am preparing for our second SIP (Sjoggies In Pittsburgh) Support Group tomorrow.
      But I look forward to checking out your blog!

      Thanks. SjoDry (Sandy)

  4. Patty O says:

    Reblogged this on A Thankfully Imperfect Woman and commented:
    This is a fantastic – non-emotional explanation for people who do not deal with chronic illnesses…in this case Sjogren’s. For my fellow Sjogies:

    • vitalsignspgh says:

      Thanks Patty O.

      I apologize for my delay in responding to your comment. I have been actively doing battle with Sjogren’s & been out of commission for a short while. I am way behind on answering my comments :-O I appreciate the re-blog of the Open letter for those without Sjogren’s on your site. I am part of a large Sjogren’s Forum & also run a Sjogren’s Support Group SIP) here in Pittsburgh. I see so many Sjogren’s Patients who do not have the kind of support that they need. Sjogren’s is a difficult disease & rather nebulous to nail down, even for many Physicians who know little about it. It is often difficult for family & friends of Sjogren’s Patients to understand the reality of Sjogren’s. For many Sjoggies…they don’t look sick, so it is easy for well-meaning folks to not understand.

      Patty, you have a lovely, faith-filled & uplifting blog.
      Thanks for sharing your gift with others.

      Take Care.
      SjoDry ~ Sandy

      • Patty O says:

        Oh Sandy, I can’t tell you how much your response and kind words mean to me. I, too, have been having issues and have been absent from my blog. I haven’t posted a blog since February. After having some very scary symptoms, I pushed beyond my local clinic to a clinic 2 hours away and they sent me to the Mayo Clinic. I just finished appointments yesterday and they’ve diagnosed me with 5 more diagnosis. Two of which are Limited Autonomic Neuropathy and Orthostatic Intolerance. Both can be tied to Sjogren’s. Oh the fun of it all, hmmmm?
        There aren’t any meds I can take for either because of other issues I have, and/or because of meds I’m on. Sigh. But knowledge is power, isn’t it? Having the names to attach to the issues, and tips on how to help ease the symptoms is incredibly empowering.

        Life goes on and if this 5 month stretch has taught me anything, it’s to appreciate God’s gifts even more…the sunshine, my husband, my children, the good health I do have left. I started writing a blog about the ‘things I’ve learned about myself’ during this experience, yesterday on our way home…I hope to post it soon.

        Thank you again –

        I hope you’re feeling better. Take care of yourself Sandy. And thank you for your encouragement.

        Patty O

  5. david says:

    Dealing with a family member who suffers from this auto immune; I can attest I’ve been guilty of the “you’ll be ok!” It wasn’t until I truly educated myself about the condition that I could fully grasp the conditions. My family member was diagnosed with sjogren’s at an early teenage. No one can really prepare you for this. I really don’t know what to do to help because I wish I could just make all the misery and symptoms go away. I really wish science can come up or develop a medicine because my biggest fear is losing my younger sibling and watching the slow crippling effects. I still ask why? I guess I’ll really leave the rest in God and scientists.

    • vitalsignspgh says:

      David,

      How nice that you took the time to educate yourself in an effort to understand and help your younger sibling. Many family members do not even make that effort. No one including doctors, have all of the Sjogren’s answers. But having a family member who cares enough to listen and be supportive is so meaningful! You are awesome for being that supportive family member to your sibling. I have found that being a part of the Sjogren’s World Forum & educating myself as much as possible has helped me to understand Sjogren’s as much as possible. I have also gained additional support from others who are sharing my same journey. Yes, Sjogren’s is out of our control. And you are right, it is in God’s and the Scientist’s control. But kudos to you for walking the journey along with your sibling.

      SjoDry

  6. Pingback: An Open Letter To Those Without Sjogren’s Syndrome | Surviving Sjögren’s

  7. Hi SjoDry! I love this!!! I am including it on my blog: http://www.survivingsjogrens.com
    Thank you so much for the support you offer the rest of us Sjogren’s sufferers. 🙂 It means the world!! -Kellyn

  8. Jamie Diianni says:

    I am a parent of a 9 year old boy who was diagnosed with Sjogren’s at the age or 7. I am continually getting advice on how to fix it or get over it because he does not look sick. I even feel his physicians do not fully understand the effects it has on him or that it will in the future. I will share this letter for his sake.

    • vitalsignspgh says:

      Jamie,

      Please accept my apologies for the delay in responding to your comment. I would be happy to communicate with you privately.
      I have your email address & will contact you.

      SjoDry

  9. Pamela says:

    Thank you so much for sharing, this was wonderfully written! I myself have Sjogrens, Lupus, myositis, fibromyalgia and cancer survivor your open letter is so accurate and I truly appreciate it as I will use this as a learning tool for family and friends I can’t tell you how many times everyone tells me ….” If you just get out and exercise more or you look great, I can tell you’re healed or if you would just give up meat and start to juice, your health issues will be gone before you know it …. You don’t need all that medicine just meditate” sometimes I just want to scream my head off!
    If they only knew what it was like to sit in a treatment chair for a 3-4 hr infusion and then come home puking my guts up and not being able to get out of bed because every bone/joint/muscle and even my skin hurts and the countless trips and admissions in the hospital having to have an NG tube down my nose for weeks at a time and gaining pound after pound from all the steroids and lets not forget my hair loss and not just patches but all of it as well as the constant rashes and no longer being able to enjoy the sun … not being able to be the social butterfly I once was. I miss the old me and the life I once had. If it weren’t for my amazing husband and family I have no idea what I would do they are my world, they keep me going when I want to give up the most!!! And I also have a wonderful healthcare team and a very admired Rheumatologist …highly educated, great bedside manners, I never leave the office with unanswered questions she and her nurse go above and beyond being just another 15 minute patient visit, all things considered, I’m extremely blessed!!!! Than you for letting me vent, I needed that 🙂

    • vitalsignspgh says:

      Pamela,
      You are certainly welcome to vent anytime! The great thing about being able to talk/connect with other Sjoggies, is that they get it! No explanations necessary. We all live this.
      It sounds like you have had some very difficult, additional challenges. As hard as it is to do, I find that affiliating myself with those who truly support me & ignoring & distancing myself
      from the others works well for me. I am so happy that you have a great “dream team”, as I call my specialists. That is worth so much!

      I wrote the Open Sjogren’s letter because I had observed & spoken to so many Sjoggies who were/are dealing with unsupportive friends & family. If it is helpful to you, I am glad.

      Take Care Pamela.
      SjoDry

  10. Reblogged this on drybutterflies's Blog and commented:
    This article is just what I needed. Thank you for being on point

  11. Douglas Dorman says:

    As an individual suffering with sjogrens everyday for over 20 years . 17 of those years with the added stress of not knowing what was wrong with me as well as at least 6 doctors not knowing. This letter pretty much sums up what a lot of us go through. Besides strangers, friends and even the closest family members forget what we are going through and sometomes expect too much from us. I always try to do what I can and maybe yhat is a mistake. You know yhe old saying ” give them an inch they ll want a mile” . Sometimes this comes true. Read the letter . It may make you understand sjogrens a little better.

    • vitalsignspgh says:

      Douglas,

      I’m glad you found the letter useful. I tried to find the right words to explain a chronic illness (that defies explanation). Hopefully, it will help some of the folks in your life to understand. Take Care. SjoDry

  12. My wife has Sjogren’s in addition to some other complications, so for both of us and the people we want to share this blog post with, thank you.

    • vitalsignspgh says:

      Thanks Jeffrey.

      I know a lot of Sjogren’s folks & several of them have non-supportive/understanding friends or family members. I decided to write something that might be helpful.
      I hope it works for you both also.

      SjoDry

      • Daniela says:

        Sjodry, if you can email me that would be wonderful. I was recently diagnosed and would love someone to talk to.I hope you are well.

        Thank you.

      • Daniela,

        I will try to send the letter to you by email. Today, our email is not working. But as soon as it is, I will send it to you. I am sorry I am just seeing this request. In the meantime, if you are on my blog site & open up the letter to read…you should be able to hit print on your computer to print it out…or right click & select all of the text on the letter & save it to your computer.

        Take Care.
        SjoDry

  13. lavieavec says:

    Hello, just discover your blog today…thanks to Twitter 🙂
    I would have liked to write this myself…so true, so realistic, so moving. You perfectly describe my state of mind. Life can be so hard that it really cheers me up to read articles like yours, makes me feel less lonely.
    Thanks and take care of yourself…

    • Lavieavec,

      Thank you for your kind words. I am sorry it has taken me so long to get caught up on my comments…I often forget to check & respond to my blog comments. It does feel good to connect to others who
      understand how you feel & what it is like to live with this often, life-altering illness. I have found that stepping back from those people who are quick to make judgements about me & my health, keeps me in a more positive frame of mind. People that must live this illness every day do understand how you feel and what it is like. I hope that you have found supportive people in your life to help you on this journey.

      Take Care.
      SjoDry (Sandy)

  14. Melissa says:

    SjoDry, I was recently diagnosed with Sjogren’s and came across your blog. Reading this letter was like seeing my thoughts and feelings in someone’s words – what a relief to know that I am not alone (or crazy!).

    A lot of people in my life have attempted to be helpful by either minimizing my illness, telling me that I’ll be fine, or suggesting that I do this or that… I appreciate the thoughts and concerns, but their lack of understanding is so frustrating (and exhausting!). Thank you for putting your words out there, I will certainly be sharing them with many of the people in my life.

    Many thanks!

    • Melissa,

      I feel terrible that I am just seeing your comment! As I mentioned to someone else…I do well to even get a blog post published & often (most of the time) forget to check & answer the comments. Living with Sjogren’s is beyond challenging..and becomes our unchosen way of life. For those who are not living it, it is beyond comprehension for them to understand what it is like to live this. We are whiners, hypochondriacs, cyberchondriacs, etc. For me, once I realized that I was not crazy or neurotic & fully understood what & how Sjogren’s presents itself, I was empowered. For those who have made those judgements about me..so be it. It says more about them, than it does me. I choose to surround myself with people who understand, who lift me up and make me happy and my faith. Having people who are unsupportive in your life just drags you down further. Lord knows we don’t need the additional battle.

      Be strong & surround yourself with positive people who you don’t have to prove yourself to.
      Take Care!
      SjoDry

  15. Koni says:

    This needs to be kept “alive”. I now currently being sent here..sent there… “Could be’s, so let’s do this then try that’s”.
    It is impossible for me to explain how I am feeling to those who knew me before. I am NOT the same person I was. My inside self is a mess, my head is a blur and the pain of it ALL is so intense that it overwhelming!!!
    I shared this post, I’m sure my FRIENDS/Family will overlook, scroll past and not read and or roll their eyes. It’s impossible to educate those who have no clue.
    Thank You for this letter. I read it not knowing if S.S. is my prognosis or not; but YES, THE STRUGGLES ARE REAL!!!
    Continue to Educate!!!

    • Thank you Koni. Sorry I am just getting around to acknowledging your comment. I do well to get a blog post out & often forget to check on the comments. I appreciate your supportive words. I surely hope that you gain some support. This is a hard journey (even with support). I encourage you to join the World Sjogren’s Forum at: sjogrensworld.org There are Sjoggies from all over the US & other countries. You will get a lot of support there and I would also urge you to look for a Sjogren’s Support Group in your area. Check the Sjogren’s Syndrome Foundation list of support groups in your area. You might also wish to start a group. When I started one here in Pittsburgh, I thought we might get 1 or 2 people if I was lucky. At a recent meeting, we had 50 people attend. My doctor & other doctors refer to my group & I am constantly getting new members.

      So you may have to dig a little for that support, but you will find it!!
      Take Care of yourself.
      Sandy (SjoDry)

  16. I am in tears reading that. Thanks for sharing. This says what I have been trying to formulate in my head to say to my loved ones.

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