Not feeling sick enough: Impostor Syndrome in chronic illness

Last month I had an appointment at a rheumatologist to get evaluated for Hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD). If you follow me on Twitter, you already know this did not go so well. I already knew I didn’t fit the hEDS criteria, as they’ve been made really strict in order to find a gene. But I also am just not hypermobile enough, or not in the right joints, to qualify as generalized hypermobility. Technically, this means I would fit the criteria for Localized Hypermobility Spectrum Disorder – but when I asked about it, it turned out they didn’t want to give out that diagnosis. In fact, they didn’t really seem to be a fan of syndrome diagnoses at all: they just wanted people to receive treatment regardless of diagnosis.

While I agree that even when you are undiagnosed, you should have access to symptom treatment and management, you don’t go to a doctor only to be told that they are not going to give you a diagnosis even when it fits. I’ve been there a couple of times. Although I do have an official ME/CFS diagnosis now, the first time a specialist told me my symptoms fit the ME/CFS criteria, they still did not actually diagnose me with it. And every time things like this happen, I start doubting my own illness. I start doubting whether my symptoms are actually bad enough, and whether I’m actually sick enough. In other words: I start to feel like an impostor in chronic illness communities.

Self-doubt

This feeling of self-doubt is quite common in chronic illness. It can take years before you are diagnosed with a chronic illness, partially because doctors are often quick to dismiss our symptoms. When they don’t know what’s going on, they often either don’t look any further or even gaslight us and tell us that it is all our heads. Often, we have to do all the research ourselves and diagnose ourselves before a doctor does.

This often has a big impact on how we see our own illness. If we are constantly told by doctors that we are not really sick, that there is nothing wrong, that it is just all in our heads, we eventually start to believe that. And a lot of the time, we also have to deal with friends and family members who do not believe us, or think our symptoms can’t be that bad.

Personally, I am very grateful to be in a position where most of the people close to me do believe me. But I have dealt with a fair share of doctors who didn’t – and even when they do, them not wanting to do certain tests or give a diagnosis certainly doesn’t help. It makes me wonder whether maybe all of this is normal. Maybe this is a normal degree of hypermobility. Maybe everyone is this fatigued all the time. Maybe I’m overexaggerating my pain. Maybe there is nothing wrong with me.

Comparing myself to others

Usually when I have these thoughts, I try to look at what healthy people experience, which makes me realize that my symptoms are definitely not ‘normal’. But what I tend to do the most is only comparing myself to other sick and disabled people. This makes me constantly doubt my own symptoms, and specifically my ME diagnosis – because surely if I had ME, I would be a lot sicker than I am. I’m only mild, so do I even really have this? Do I even really have post-exertional malaise (PEM), rather than just fatigue and exercise intolerance?

I was a lot more convinced about having hEDS or HSD. At first I didn’t think I was hypermobile – but when I finally figured out I was, everything about this made sense to me. I knew I did not score super high on the Beighton scale, but I kept finding out I had a lot of other signs of hypermobility. A lot of the things I thought were normal, were really not. And then there’s the genetic part: my mom being hypermobile and having fibromyalgia, my grandma having chronic pain from a really young age – both seem indicative of some sort of underlying genetic connective tissue disorder. There are so many similarities between me and people with these diagnoses, and I share several of the comorbidities such as dysautonomia and gastro-intestinal issues.

Even though here, too, I was constantly comparing myself to others and being scared I wasn’t sick enough or hypermobile enough, the community constantly reminded me that no, you do not have to have full dislocations to be hypermobile. You do not have to be flexible to be hypermobile. You do not even have to pass the Beighton test to be hypermobile.

Feeling like I don’t belong

But then I went to see a specialist and my fears were confirmed: I am not hypermobile enough to get a diagnosis. As far as they are concerned, I do not have EDS or HSD – and the joints that are hypermobile have nothing to do with any of my other symptoms. And it threw me right back into endless self-doubt. Because surely, if I truly had HSD/hEDS I would have generalized hypermobility. Surely I would pass more of the other criteria. Surely my average pain would be worse. Surely I would have been diagnosed.

So here I was again, wondering if I belong in these communities. Feeling like I am an impostor. Because I might have an ME diagnosis, but I did not have a viral onset, and my exercise intolerance might not be ‘true’ PEM. According to some people in the ME community, I do not belong there, which sometimes can make it hard to really feel at home in these communities.

And then there’s the hypermobility community, some of whom also have ME. It’s where I feel the most at home, it’s where I see the most similarities. But I can’t get diagnosed, so maybe I do not belong there either. Maybe I am really overexaggerating, faking even. Because all of these people are sick, and surely my symptoms are not that bad. Maybe I am not even really sick. Maybe I don’t belong in chronic illness spaces at all.

It’s okay to be (partially) undiagnosed

And deep inside, I know all of these thoughts aren’t true. I only have to look at healthy people again to realize that, yes, I am truly sick. All of my individual symptoms might be mild – but together, they’re still pretty debilitating. Sure, I might not be as sick or disabled as a lot of other people, but this is not a competition. I am chronically ill, and I do belong here – even if I don’t know where exactly.

I have to keep telling myself: it’s okay to be partially undiagnosed. It’s okay to not know exactly what is going on. When it comes to ME, the truth is that until there is a biomarker, there is no way to tell whether I ‘really’ have ME or not. There might even be several different illnesses that are currently all called ME. What I do know, is that I fit the criteria – so I do belong here. I am not an impostor.

And the same applies to hEDS, really. Until they find a gene, or multiple genes, we don’t know exactly all the ways in which it can manifest in different people. Maybe I will someday find out that I do not have it, and it’s just a coincidence that I happen to be hypermobile and have a lot of the comorbidities. But maybe one day we will find out that the criteria are wrong, and I do have it. Until then, I just know I share lot of similarities with the community and I do, at the very least, roughly belong there. I am not an impostor.

And if you are living with this constant self-doubt too, I want you to know that you are not an impostor either. Your symptoms are real, and you deserve a community and proper care – even if you are (partially) undiagnosed.

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