Everything in life is a competition now it seems. In the world of people living with illnesses (acute or chronic), well-meaning people make being sick into a competition too. Most of the time, it’s an attempt to make somebody feel better by saying, “at least it’s not X” or “it could be worse.” And they’re right, I guess. At least I have Ehlers-Danlos (EDS) and not cancer, and at least my EDS is type 3 (hypermobility) and not type 4 (vascular). Those are things to be grateful for, right? I tend to disagree, not because I think my situation is worse than somebody else’s but because it’s different, and because we’re not in a competition to see who can be the most sick, or the most in pain, or lose the most to their illness.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
We need to recognize the reality that people are in pain despite the fact that it seems like it could be worse. By downplaying somebody’s illness (“it could be worse!”) the person becomes incredibly invalidated. Even though it’s your effort to try to make them feel better about their situation, it often makes them feel worse. It makes them feel guilty that they are upset about their pain, and pain shouldn’t be ignored. It shouldn’t be dwelt upon either. We don’t need long-lasting pity parties or permanently negative attitudes. But diagnosis of any type of medial problem can be incredibly devastating.
The news of cancer, diabetes, pneumonia, fibromyalgia, a trauma, anything chronic or acute is life-changing. Some of those things may put you out temporarily. Broken leg mean a missed soccer game, broken back means months in rehab, cancer means months or years of treatment and recovering, and others cause life-long effects. Fibromyalgia leaves you in pain every day for the rest of your life. Diabetes and its complications are realities you have to deal with every day for the rest of your life.
How can we measure a person’s struggle anyway? You can’t. You can’t say that somebody’s breast cancer isn’t as bad as somebody else’s lung cancer. You can’t say that my EDS-3 is any less painful and limiting than somebody else’s EDS-4. You can’t say that somebody’s mental illness is easier to deal with than somebody’s diabetes. The reality is that our situation can always be worse. The cancer can always spread, the diabetes can always cause another complication, pneumonia can always turn into sepsis, things can always get worse.
We know this. Anybody who is struggling knows their situation isn’t the worst it could possibly be. We don’t need the reminder, despite the fact that you’re trying to be supportive. The problem is, for the person, the diagnosis may be earth shattering, it may feel like the end of their world, even if it’s just for a moment.
I’m not saying that you need to automatically pity anybody who has some health issue. We don’t need you to feel sorry for us. What we do need is a little compassion and understanding. Try to understand that our lives are changed, that everything we planned (for tomorrow or for five years away) is now up in the air, or even completely out of the question. It doesn’t matter that somebody else is struggling “more” in your eyes than what we’re experiencing because our individual situation is no longer what we expected.
I want to give an example to try to make this concrete. EDS type 3 in my case is not as bad as others’ because I don’t dislocate joints as often. However, I still have severe fatigue, I’ve still lost the ability I used to have to do most of my hobbies, I still have daily pain and tons of medications, the decision to have kids is now completely altered compared to what I expected growing up, my future career is now in question, my friendships are in jeopardy because I’m constantly having to decline to “hang out” due to the fatigue. So yes, it could be worse, for sure, but I still have lost a lot, and my life is now permanently changed based on one trip to the doctor.
We can come to terms with this. We can learn our new limits and we can accept our situations. We aren’t necessarily happy about it, but we aren’t in a competition to say who is struggling more than us, who is hurting more, or whose life has been “ruined” more. We instead try to focus on what we still do have and can do. That’s reasonable, but we also have to mourn the loss of the things that have changed, whether it’s something short term or long term. When you try to tell us things could be worse, it invalidates our personal struggle, and it’s extremely frustrating because we feel the need to try to justify to you or to ourselves. Plus, we feel like we don’t have an ally because you’re not understanding what we’re dealing with. The struggles that come with an illness are very personal. They’re often much deeper than what people can see because of all the individual implications that a disease has.
Stock photo by kieferpix
Alexandra is a wife and nurse dealing with Ehlers-Danlos syndrome (a connective tissue disorder that affects every body system and causes chronic pain) and its comorbidities (postural orthostatic tachycardia syndrome, migraines, irritable bowel syndrome, mast cell/allergy issues, sensory processing issues, adrenaline dumping/panic disorder, and general dysautonomia). She loves her husband and three golden retrievers more than anything and still tries to do the hobbies she can, when she can (photography, horseback riding, painting, singing and playing violin and piano).
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