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.