Why should I feel guilty about something I can’t control? That’s what part of my mind says. But the part that actually controls my feelings completely overrides that. This is in part due to experiences I’ve had that have made me feel guilty, whether the feelings were actually warranted or not.
Individuals with chronic illnesses shouldn’t be made to feel guilty about their conditions. After all, cancer patients aren’t shamed for having cancer, are they? There was nothing they could do to prevent it. In the same way, women with endometriosis shouldn’t be made to feel guilty for having this unpreventable disease.
I was diagnosed with endometriosis two and a half years ago, although my symptoms had actually started fourteen years prior to that time. Even in the relatively short period of time since my diagnosis, through my own personal experiences and time spent in Facebook support groups, I have seen firsthand the guilt that is placed on us…and all due to a disease we cannot control.
We are made to feel guilty for being in pain. When I was diagnosed with endometriosis, my primary care physician (PCP) willingly took charge of my pain management regimen because she knows enough about endometriosis to understand it can be a very painful condition. But then there was a week earlier this year when everything got messed up. For reasons that I still don’t know, my doctor never got the message that I needed a refill on my medication. It took two more days and speaking to three more people to get the message to my physician that I was by this point completely out of pain medication (and I had put the request in early to prevent this). My pain had skyrocketed almost to the point of requiring a visit to the emergency room. Upon talking to a nurse practitioner about the problem, she said that the refill may have been rejected by my physician because pain meds can only be filled every 30 days. *clears throat, throws on white lab coat* Listen lady, if you’re going to make up something, don’t make it up to a practicing pharmacist who knows drug laws better than you do, because that “law” you just told me about does not exist. A fill of a controlled prescription is based on not being permitted to write more than a 30 day supply, so you should be able to do the math and see that my prescription is for a 15 day supply and it has actually been 20 days since my last fill. Get it right. Then, when she realized I had called her out on lying, she said, “Well, some physicians might deny refills to patients displaying addictive behaviors.” My physician has never accused me of such a thing and even supported a trial of long-acting narcotics for several months (and it was her idea) to get the pain under control until it could be fixed surgically, after which I weaned myself off the long-acting narcotic. But I was made to feel like a drug-seeker by a healthcare professional who didn’t know me or my health history whatsoever.
We are made to feel guilty by trying to rest. When you have endometriosis, your life changes. You can’t do what you used to be able to do in some cases. In my case, being able to work through my symptoms became a challenge fairly quickly. When my endometriosis was at its worst two years ago prior to my excision surgery, I was practically bedridden. If I wasn’t at work, I was at home in bed, curled up with my heating pad. Strangely enough, if I was at work, I was also curled up on a chair…with my heating pad. But things were certainly quite challenging at home. Due to the timing of life events, my brother-in-law and sister-in-law were living with my husband and me for the summer. I felt bad, because I could have been spending time getting to know them both better, but I just couldn’t get out of bed for anything except needing to go to the bathroom or needing to go to work.
We are made to feel guilty when we deny intimacy. I will start by saying that my wonderful husband has never, ever pressured me into sex and would immediately stop in concern if it was too painful for me. But the first four years of our marriage were severely lacking in intimacy due to the endometriosis (which we didn’t know about at the time.) I felt like a horrible wife for not being able to perform this act of love with the man I love. My husband has never been unfaithful, but there are many relationships out there broken by the fact that women with endometriosis are often too uncomfortable or downright in pain while being intimate with her partner.
But then women with endometriosis are often made to feel guilty for other reasons, too. One thing a lot of people have difficulty comprehending about chronic illness is that it is, in fact, chronic. Which means it isn’t going to go away. We’re not going to “get well soon.” When we hear such questions as “Aren’t you better yet?”, it makes us feel guilty for not being better, even though there’s not necessarily anything we can do about getting better. I’ve done all I can for myself. I have celiac disease, so I’m on a gluten free diet, but I will always have celiac disease. I have endometriosis, so I’ve had excision surgery by one of the best excisionists in the world, which is the gold standard of therapy for the disease. But there is no cure; there’s always a chance it could come back. I have adenomyosis, which can only be cured by a hysterectomy, which I will have once I’m done having children, if I’m ever able to have children. But I have to deal with the daily pain until then. So when I hear questions like “Why aren’t you better yet?”, it makes me feel like I’m doing something wrong and that I should be ashamed of myself for still being sick.
If you know anyone with endometriosis (and since it occurs in 1 out of 10 women, you probably do), take a moment to try and understand what it’s really like to be in their shoes. Talk to them about it. And understand that, while excision surgery may help, all of the pain from the disease doesn’t necessarily go away after the fact. It might, but not always. We’re in this fight for life. And it’s helpful to have understanding people by our sides. Will you be that understanding person today?