Chronic Illness, Chronic Pain, Chronic Loneliness
There are aspects of living with chronic illness and chronic pain that we are ‘allowed’ to talk about. There are things we openly discuss after we have been diagnosed with EDS, POTS, MS, NMD, ME, and all the other letters of the alphabet. We are ‘allowed’ to speak about how grateful we are that we finally have a diagnosis. We are ‘allowed’ to comment on what wonderful support we have. It starts getting into grey area when we talk about the amount of unyielding pain we actually experience, and the unrelenting fatigue. We often hesitate to mention mental health issues since many of us were told for years our symptoms were “all in our head,” or from “anxiety” (that could be a whole post of it’s own).
Many of us have found when we do share our daily lived experience, we get a lot of push back in form of doubt from those who we are looking for support from. We are offered unsolicited advice, as if we haven’t been trying everything possible already. “Maybe if you just… lose weight, gain weight, did yoga, ate keto, ate vegan, ate gluten free, exercise more, go outside more, get out with friends more, stop worrying so much…” The message begins to sound a lot like we are at fault for our illness and have full control over “fixing it”. This leads to a topic we rarely speak about. In part because we don’t want to hurt our loved one’s feelings, but underneath that, it is just such a vulnerable place we don’t want to confront it in ourselves. Chronic loneliness.
It is a different type of loneliness. It isn’t a miss your friend loneliness. It isn’t an existential aloneness. It is the complete abandonment of connectedness. It is from spending endless amounts of time waiting on your own for answers, for comfort, for someone to show up. It is the loneliness that comes when no one around you can understand, and when you try to explain they become defensive, or try to fix the problem without understanding what the issues really are, and you must crawl deeper into yourself.
It is feeling like you live your life in exile. That you aren’t worthy of the attention of those around you. That the people who have the answers don’t deem you “ill enough” to get their brand of treatment. Or the flip side of that - you are too medically complex and therefore beyond their scope of practice, ‘please move along now.’ It is being in a group of people, but struggling with brain fog, or pain, or GI distress or anxiety so you can’t really participate. But that doesn’t matter because society dictates as long as we are invited, that is enough to assuage the guilt of friends who want to show support, but don’t know how.
The worst kind of loneliness is being in a group of people or with a friend, and having to wear a mask, pretending to be OK. Talking about things that you know you can’t do, you’re not going to be doing any time in the near future, but in order to make that other person feel comfortable with your illness, with your disability, you pretend. You pretend to be someone more acceptable. In doing so you can’t be who you really are, you’re just some ghost of who used to be. That to me has always been the worst kind of loneliness. Not only are you denying your own experience and pretending to be someone else for the comfort of others, you are using a lot of precious energy to do so.
Of course a person doesn’t have to have a chronic illness to experience loneliness. It is the specific flavour of loneliness that is different. Those in the chronically ill community may find some sense of solace and connectedness over this brand of loneliness. Here in this community we can appreciate the isolation of the endless hours alone in pain. Or being too exhausted to do anything other than lay in bed staring blankly. Or the hours upon hours behind the hospital curtain waiting for result after result, only to have it to come back “WNL” (Within Normal Limits). Another dead end, losing hope, losing faith, and over the years losing support of family, friends and the medical system itself. We sit alone behind that curtain, sometimes literally, sometimes figuratively, holding our breath that this time there will be an answer. Some answer that will help. That will make the pain less. That will explain why we are so tired. We beg for answers, for help, for someone to care long enough to find the answer. Instead we are left sitting in that hospital corridor, lab waiting room, and behind that curtain, without any answers, without treatment, without support.
My story is not unique. It often takes years or decades for diagnosis and treatment/intervention. From onset of symptoms it took 3.5 years for my diagnosis and surgery for endometriosis. Of course along the way I had a physician who denied that young women could even have endometriosis (they can by the way, for more info visit https://www.endofound.org/), a gastroenterologist who told me that my issues were because I was sexually molested by my parents as a child (I was NOT! I was in his office less 10 minutes, he didn’t even do a history, he just decided I was young and “looked healthy” so it must be psychological. I didn’t see him again). I was diagnosed and treated as hypermobile at 8 years old, but the only information I received at the time was; you will continue to have a lot of strains, sprains, tears, ruptures, bursitis, tendonitis – when this happens just go to a physiotherapist for treatment. I have had a physiotherapist since then, actually over 30. Only 3 have been helpful. 8 have caused injury to me. The rest were pretty useless. It took over 3 more decades to get my diagnosis of Ehlers Danlos Syndrome (EDS) – which I had never heard of before. By then my hips, knees, ankles, elbows, wrists, and spine were all wrecked. I’m in a variety of braces and a wheelchair. It took 20 years from onset of symptoms and a major life-threatening exacerbation for a diagnosis of Mast Cell Disorder, which before the moment of diagnosis, I had never heard of a Mast Cell. Now I have to explain to nurses and doctors about them and why they are problematic in me, with the added request; “please don’t kill me while I am in the ER.”
The years of my childhood, youth and adulthood have been spent sitting by myself in offices, lobbies, hallways, labs, ERs, ORs and my room. Distracting myself with other things – because after all, its all in my head, right? I got so good at ignoring pain because, “it is just anxiety…” that I broke my tibia and figured “oh I guess that part of my leg just hurts now.” It wasn’t until 2.5 months later on an unrelated CT that I was notified it was broken. That did explain why it hurt so much. I was diagnosed with Ataxia (disorder of the coordination of movement, where there is difficulty with balance and walking) by a neurologist. It took 3 years to get to a neurologist specialized in ataxia to watch me walk and tell me it is NOT Cerebellar Ataxia. He said that I was dislocating my hips, knees and ankles every step I was taking. That was a shock to me. This news came several months after my diagnosis of EDS, but at that point I hadn’t realized how significantly the EDS was affecting me. In those 3 years I had seen a few neurologists, PTs, OTs, a Doctor of Sports Medicine, how is it none of them noticed this detail?
How do you take all of this information and so much more, because we have all been through so much more than a few lines on a page could ever portray - how do we take all of this - that is bottled inside of us in the form of rage, defeat, abject terror, grief and terrible loneliness and convey that to our friends and family? Because until we can be understood there is this disconnectedness that leaves us isolated in our own experience, no matter how many people fill our rooms. And we carry on performing the role of the person they want us to be to protect ourselves from their judgement.
How do you connect to your friends and family so you feel understood, cared for and supported through the days, weeks and years?
Join the conversation here or on our Facebook group “Homesteading with a Disability”