“You can’t be ill. You look fine.”

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.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

5 responses to ““You can’t be ill. You look fine.”

  1. Lynnd Ham

    Hi reading the information on your website has both relieved & distressed me. I have had painful periods along with pain during my period when defacating since i was 16. I have passed out on the loo at work due to the pain. I was told that i had a low pain threshold & that basically i was a wimp by family members. Unfortunately i believed this to be true. Aged 46 & now in constant pain a laparoscopy revealed i had endometriosis i had chocolate cysts & my right ovary was attached to the back of my bowel. I waited 13 months for a hystetectomy in agony eventually
    put on morphine. 2007 i had my womb ovaries & cervix removed. I was told that i was cured of endometriosis & that any of this tissue left outside my womb on my bowel would shrivel up & die but i continued to experience pain i was told that this was due to scar tissue or adhesions & was put on Amytriptyline which got rid of it. For the last 2 weeks i have mostly been in bed with the same pain i had after the hysterectomy. It was at this point that my daughter, who had been diagnosed last year with endometriosis & had laser treatment, showed me this web site. After reading that a hysterectomy doesnt necessarily cure endometriosis i felt relieved not that i want to still have it but to have an explaination or reason for my pain. Also i felt distressed at the renewed possibility that this was never going to go away. I have experienced many difficulties with medical staff along the way who simply seemed not to believe i was in pain. Now i am experiencing from most of my friends of years disbelief that im ill again ‘ after all ive had a hysterectomy & so cant possibly be in pain’ but i am. I feel empowered by your candor & knowledge that others are suffering the same difficulties. Im struggling with pain, frustration with my health & limitations & disappointment that the people around me cant empathise but acknowledge i would probably be the same if i had not experienced it first hand. At least i can empathise with my daughter & try to support her as much as i can. I have been suffering for years since my teens with depression & being in pain all the time makes it impossible to be optimistic. However being able to identify with you has given me hope that maybe i could adopt your strategies & be able to go on living…
    Thank you for reaching out in this darkness & providing some light for me & im sure many others.

    • Thank you for sharing your story, I’m glad I could offer you some hope, it’s certainly not easy living with endometriosis, but with the right help it is manageable. Your story about not being believed, particularly when it comes to post-hysterectomy pain is one I sadly do hear commonly. The problem is endometriosis is such a nasty, beguiling disease. It defies the logic that most doctors are practised with, it grows and remains despite incredible odds, but you’ve already proven but you and your daughter can use these incredible odds to your advantage. To manage and thrive despite it. Best of luck to you.

  2. Amber

    I got diagnosed with endometriosis in August of last year. I had a rather large cyst on my ovaries so it had to be removed. When they got inside they found out that I had two cyst, endometriosis on 90% of my body, it was so bad that my tubes had twisted. The doctor scraped everything out took the cyst out and untwisted my tubes. I thought by having this surgery it would make me feel better. It’s been over a year and I feel like nothing has changed as if it has gotten worse. Has anyone had this happen to them after the surgery? L

  3. Lola

    I felt so relieved after going trough most of your pages, i pray and wish there there is a permanent treatment and healing for this unexplainable monthly pains during ovulation and menstration thannks

    • Thanks Lola, interesting fact. Endometriosis doesn’t just hurt during periods or ovulation. I know many people who feel it all the time (even when their periods are stopped).

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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