For the last few months every doctor’s appointment, meeting with health professionals, assessments and any conversation I’ve had about my health always ends with the phrase “You’re very complex.” Of course, I don’t need to be told this – after all, one of my conditions is called complex regional pain syndrome (CRPS). But, in my opinion, telling someone with several complicated conditions they are complex doesn’t help them. I am asking for help, not to be told what I already know. Being complex is challenging, very vague, and not helpful. Most people haven’t heard of your conditions, and the likelihood is this: even if they have heard of the condition, they won’t fully understand it. Its not their fault, my condition is classified as a rare disease and medical professionals can’t know everything. Plus, medical journals can’t tell doctors how the condition actually feels.
However, when a patient is labeled “complex,” it often feels like it is the doctor’s “get out of jail free card.” It’s doctors telling you they have no clue how to treat you, and it feels like the they are giving themselves permission to get treatments wrong. Myself and many others who have a rare disease agree that we would prefer a doctor to tell us directly if they don’t know how to help, rather than wasting everyone’s time with trial and error –when many patients already know this won’t help.
It’s not only doctors who call you complex; social workers also use the same phrase. I have found their reaction is worse than doctors’ because some automatically think you’re using your condition as an excuse for all the symptoms you have. Their frequent response is “Oh, your pain and fatigue can’t be that bad.” They haven’t heard of the condition; they don’t know the symptoms and they don’t understand it. Yet, they still judge how much we suffer and their judgment is hurtful, and almost always wrong.
After researching and asking the chronic pain community their thoughts, it is my belief that the only people who truly understand complex chronic illnesses are those who have the condition themselves. Everyone agreed with me on this: it is lonely and scary to be complex. Realizing that no one can understand your pain or your feelings and that, in my opinion, it’s close to impossible to find help, is difficult. Not being believed about how much you suffer is stressful and upsetting. It can make you feel isolated.
I believe that when you’re complex, having a strong support network made up of both other people with complex conditions and friends and family can help combat the challenges. This way, being “complex” doesn’t have to mean hopeless and alone.