Please Don't Assume I'm Unhappy Because Illness Blocks My Path to 'Normal' Milestones

I am awake at 3 a.m. again, trying to distract myself from pain with a whole lot of reading as research for a piece on pets and chronic illness. At the back of my mind I’m considering an incident that happened with one of the doctors I’m seeing. He asked if I had considered whether my chronic pain was as a result of stress. And I said at the moment, in spite of struggling with issues with lupus – an enlarged spleen, chronic lymphocytosis and a pain condition known as complex regional pain syndrome (CRPS) – I didn’t really have a reason to be stressed out. Besides, my neurologist was pretty certain that my CRPS situation was unrelated to any primary psychological stressors.

In response to my conversational explanation about where I am psychologically, why I feel content emotionally, the doctor goes off and says, “But surely you must be considering the things you have missed out on because of illness. I imagine any woman would want to be married and have children and a family of her own, a home of her own, by the time you reach your age.”

Wow. The fragile parts of me hurt just a little bit with that comment. But then I was too furious to listen to them. I set off on a long and pointed monologue about why what the doctor said was inappropriate, and even if it might be true, quite cruel to say. I wanted to make sure he understood that even if his patient’s psychological state was important, there were much kinder and efficient ways to help his patients discuss and cope with their situations without placing unnecessary expectations on them. I expressed my clear disappointment in his lack of professionalism.

Frankly, I foamed at the mouth. If I hadn’t noticed my mother watching me with a look halfway between ¡brava! and astonishment, I would have kept going. The doctor apologized and said that the wording to his suggestion hadn’t come out right but that he hadn’t meant to offend or hurt me.

It happens a lot though, and not just with doctors. People often mouth off ideas and opinions without considering their effects on the person they are directed at. It is definitely not the first time someone has made assumptions about my life or my emotions just because I am living with autoimmune disease.

This incident closely follows the other one where an acquaintance waltzes in and declares that my lupus is healed because they prayed for me all of last night. And since I haven’t yet received that miracle healing, there must be something wrong with me. I have no faith. I am wrong. And since I am burdened with this lupus for as long as I am on this side of the system of things (lupus has no cure) what then, am I less?

Is this how society see us, the people who must live with chronic illness – lupus, diabetes, multiple sclerosis, sickle cell, cancer, etc. — or with disabilities and access challenges? Are we less?

If my illness delays, modifies or even blocks the path to my reaching “normal” benchmarks – school, university, career, wealth, marriage, kids etc., does that make me less of a human being, reduce my value in society, banish me to the land of the desperate and lost?

I told one of my closest friends recently that in spite of constant pain and illness I felt happy and quite content. She totally got it and that impressed me. She is unmarried, for reasons much different from mine. (My reason for being unmarried has nothing to do with my illness, but lupus definitely fortifies my state). My friend is raising two young children on her own. She is not wealthy, and is in fact struggling financially. But she too feels happy and content. For a few minutes we discussed why we both felt that way about our lives in spite of what other people seem to think should be obstacles to our happiness.

Of course, emotional states are likely to change. Life includes losses and various sorts of disappointments. The point, though, is that happiness should not be staked on one’s reaching perceived societal goals, but rather on acquiring a state of personal contentment no matter what challenges you are facing.

My doctor should have tried to encourage a positive outlook on life, rather than make me feel like I had a reason to feel broken and sad. He failed. So I fired him.