How to Convey Chronic Illness?

I will inevitably be coming back to this topic because there is just so much to be said about it. However, before I run out the door to yet ANOTHER doctor appointment, I wanted to address this issue – how do we, as people who have dealt with chronic illness(es) for a long time convey how we are feeling to those who do not deal with at least moderate chronic disease? Although the answer to this question might seem obvious (for example, “I feel sick!”), there are so many subtleties to the manner in which we necessarily have to answer this question in order to come close to portraying the way we actually feel.

As an example, yesterday I was dealing with terrible steroid withdrawal (short version of a long story for those of you who might not know my circumstances – I have been on / off steroids – mostly ON – for the better part of 16 years and I have been trying to get off them 100% for about 18 months now – I am finally down to the equivalent of 2mg prednisone, but every drop is incredibly difficult, and every drop at this point is so “rationally” large that the withdrawal that comes with it often takes weeks to pass); however, I needed something I could manage to eat (I still have a temporary filling in my most recent root canal-treated tooth so I have to be careful what I eat and how I eat, &c.; my nausea was also at a “high” yesterday despite regular “treatment” with Zofran) so I walked down to Rite-Aid – for me, it is about a 1/4-mile-long walk, give or take. On my way there, I passed my neighbor and her friend (now my friend) who had stopped to get ice cream and were on their way back home. My neighbor invited me to stop by her house later on that evening and I told her I would stop by for a few minutes when I could. However, the trip and the heat and the steroid withdrawal all ganged up against me and by the time I left the store, I was feeling incredibly weak and ill. The way I describe this feeling is kind of like you have the flu – sans the fever and possibly sore throat, &c. I just don’t know how else to convey to others the way it actually feels to feel when I just feel “ill,” whether it be from the Behçet’s, from external factors like the heat, from lack of sleep or from too much stress, from steroid withdrawal, or whatever the cause or causes might be.

To make a long story marginally shorter, I never made it to my neighbor’s last night. I texted her this afternoon letting her know that I felt too sick to stop by and too sick even to do my sub-cutaneous infusion of immunoglobulin. The difficulty, however, comes in actually trying to get people to understand what that “sick” means. People see you out and about and walking and doing things and they think you’re okay. This is where the term “invisible illness” comes into play. However, if you were to tell someone you were experiencing “a bout of my ‘invisible illness,'” he or she would probably look at you like you had three heads. The term is convenient if one has the time to explain it to someone who has some medical knowledge, but how do we describe this feeling to those who don’t even know what terms like “autoimmune disease” or “vasculitis” mean? I know my neighbor is a very kind and understanding person – but most people see you out and about and think you are just trying to get out of commitments with them when you claim to feel “too ill” to do whatever it is they are asking you to do with them, &c.

So my question to anyone who has experienced this situation is just what I iterated at the beginning of this post – how do you describe the “sickness” you feel to others who do not suffer from chronic illness? Simply iterating symptoms does not work because I know for me, the symptoms themselves are not the “things” making me feel ill – it is that feeling that my body is boiling from the inside out, the feeling that I am going to just pass out if I take another step, the feeling that I weigh 3 tons, the absolute exhaustion that cannot be described, &c. &c. &c. I would really love to hear your thoughts on this one!

Thank you very much for taking the time to read this – I am off to another doctor appointment and I hope you are not! I do hope, however, that you are having a happy and healthy day wherever you might be in the world! Have a great one!

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