One of the hardest things to get your head around as an endometriosis sufferer is the fact that few will believe that you’re as ill as you say you are.
This seems strange, when you’ve known that something hasn’t been right with your body for years. When you’ve spent years maybe decades chasing a diagnosis for the condition that’s probably plagued you with pain for most of your adult life, only for your instincts to be affirmed by a specialist many years later. They will eventually confirm that the pain is there, that they’ve seen the tissue causing you pain with their own eyes. Then someone can produce a piece of paper that definitively states that the pain isn’t “all in your head”.
This specialist just confirms by diagnosis what you’ve known for years, that the thing you’ve battling with has a name, you’re partially relieved by the clarity that gives you, scared by the fact that there may be no end, and supported by the fact that you have proof.
Appearances can be deceiving
While other people may not doubt the pain that you’re experiencing, it’s complicated by the facts of the condition. Endometriosis is an invisible illness, it’s hard for anyone to see when you are in pain, or what is hurting you, it shares many outward symptoms with other chronic illnesses, making it easy for someone to misinterpret what you have.
These feelings are rarely felt out of spite, but a lack of awareness. Not many people will have heard of endometriosis before, or understand its unique and powerful effect on the body.
Crucially, despite suffering we often we look well, we show little to no signs of any sort of handicap. We look “normal”, no canes, no wheelchair, missing limb or scars that anyone can see. The illness prevents us easily staying under the protection of disability by giving us infrequent respite from the pain. Days where we can walk unassisted, run for a bus, eat without trouble. These small moments of normal life might help perpetuate the idea that we’re not as sick as we claim to be, that we’re still capable, and well.
The randomness of endometriosis
Endometriosis forces many of its sufferers to straddle the line of disability and healthiness. This disease also makes it hard to identify with either group appropriately. There are weeks where we are in agony, days where we’re stuck at home, unable to move without help. We are forced to lie still, embraced by nothing but nausea, exhaustion and pain. We know there are people out there with more severe illnesses or with terminal disease, but on those very worse days (those hardest moments that no one but you and your loved ones sees) that’s very hard to remember.
There is no pattern to the pain, no expected time that it will leave you. There’s always uncertainly about when it will return. The infrequency and randomness of this disease is probably the most frustrating aspect of coming to terms with it.
“Health brings a freedom very few realise, until they no longer have it.”
– Bronnie Ware
If there’s one defining trait I see in all endometriosis sufferers it is tenacity. I see it time and time again in every tired face I meet. Somehow from deep down inside ourselves, we find the energy to pick ourselves up, drag ourselves out of bed each and every day and keep going. The assertion that “we look fine” brings about ambivalence – happiness that we’re finding a way to carve out a normal life despite the odds, but also frustration that our day by day battle continues on quietly, unrecognised by the vast majority of people we come into contact with.
The positives of an invisible illness mean that we don’t face many of the prejudices that many visibly unwell or disabled people face, but it also make it harder for us to ask for help, or for help to be provided when we truly need it. We are not offered seats for example, or other, similar respites from the pain. We look normal, so we are treated as such, despite the awkward turmoil inside our bodies. Asking for help sometimes means revealing that there is a problem, and sometimes there are days where it’s easier simply not to ask, to save the awkward explanation.
We’re still capable, but there might still be days where things are much, much harder than we’d like, and the lack of visibility of our illness becomes a burden rather than a bonus.