Finding a Balance Between the Ups and Downs in My Life With Chronic Pain

The most difficult part of writing about chronic pain is trying to remember where it began, because chronic pain has been deeply ingrained in my life since I can remember. Another thing I hesitate over is the eye rolls it might already have received – when you’ve lived your life not always in the best health emotionally and physically, you become hyper aware (and anxious) of people’s impressions of you. I have tried to carefully manage these impressions all my life. But I am tired.

This is in no way intended to be a sob story. I am a hugely privileged and happy person with a life full of wonderful supportive people who astound me with their patience and love every day. What this is, is brutal honesty on a subject I have never felt able to be truly honest about. And that is living with constant pain from conditions that cannot be cured. It is a specific set of problems with no real answers and, as far as I can see, something that is not addressed in the truthful way it should be.

 

It makes sense to me to start now, today, as I’m sitting here feeling some sort of strong urge to put it all out there. I have always told myself I should write about it because reading about other people’s experiences has always given me new strength and insight made me feel less isolated. Physically, I feel the usual: aching in my back, legs, shoulder, fatigue and slight nausea, but today is a good day. I have just returned from the doctor after at least an hour of reviewing medication, discussing the next invasive investigations (that have become so routine) as well as blood tests.

This is because of a sudden a new symptom: a rash that looks like bleeding under the skin coupled with intense itching and dermatographism (he suggests I write my name on my skin to “impress my friends” and of course I immediately try it out – I appreciate a doctor with a sense of humor). He suggests weakened capillaries or possible problems with liver function and stresses the importance of no more anti-inflammatory tablets and no more alcohol if I want to limit the already sky-high risk of bleeding in my gut.

In front of him are my medical history and list of medications and he almost laughs as he tells me it has gotten to a very complicated point. Several of them interact, one that keeps my moods up and another that keeps my pain down (as much as it is ever down) and then there’s the fact that this new rashy itching ridiculousness could actually be a side effect of the SSRIs and could be worsened by the anti-inflammatories I have been taking for 18 years without so much as a day’s break. More medication leads to more complication, everything has a side effect and going cold turkey means days in bed wondering what the point is of ever getting out of it.

At this point in the post, I’m already apprehensive of sounding overly dramatic as well as feeling guilty because I know people who struggle more than I do. But over the years I’ve become an expert at dismissing my own pain as well as not giving myself any credit for coping with it, and that has revealed to be a very unhealthy and damaging attitude for me. Anyone with chronic pain will understand the intensity of the situation and how it becomes a part of you whether you resist it or not. Anyone who hasn’t experienced it can try their best to understand or dismiss it as an exaggeration, which is their prerogative.

I grew up in a typically British culture of “get on with it,” “don’t be a malingerer” and “get it sorted.” These are all very helpful attitudes until you reach a point where emotionally and physically there is no “getting it sorted.” When the three main problems (endometriosis, sclerosing osteitis and anxiety/depression) are incurable, you have to adopt a significantly different approach.

On a daily basis, I look fine, so I am expected to act fine, and as soon as that mask starts to slip I see the people around me getting frustrated. I know they do. I can sense the irritation when I call in sick to work, again, bail on a night out or wince in pain as soon as I get out of bed and attempt to explain to the person I’ve just been on a date with that it’s more complicated than us having a stress-free, casual situation-ship, whether I want to or not. These feelings are not exclusive to me or my conditions; they are something that people with all kinds of mental and physical difficulties will feel but that people generally don’t want to talk about or even listen to.

The feeling that your body and mind are inherently broken means you run the risk of being involved with the wrong people, in my experience. At my lowest point, I searched for some kind of sustainable romantic connection (that I often don’t feel capable of having) in all the wrong places and at the expense of my own well-being. It’s all fun and #romance until the point at which I seem to shut down because I don’t feel comfortable with feeling like a burden on a partner.

My last long-term relationship was with someone truly kind and understanding and patient, and even though it broke down for a number of reasons, the pain was a big factor. Unless you experience it, which I would never wish on anyone, it is the most difficult thing to get your head around. Long-term pain, fatigue and depression affect every single aspect of life: work, leisure, socializing, friendships, relationships, sex, your personality, the way you feel about your body, your finances (people generally don’t want to employ someone who can’t get out of bed for a week every month).

There’s also the fact that long-term physical problems often come with mental health problems. The two are intrinsically linked and, without fail, ignored by every medical professional I have ever seen. Endometriosis, in particular, is everything to do with your hormones – how to manage them, control them, stop them, start them – and so you pump your body full of medications, contraceptives, coils, herbal remedies, even alcohol just to forget it’s there for a while until that just causes more discomfort than it’s worth.

I don’t have a particular point to make here other than needing understanding, and more than anything the support to tell the truth and be listened to. Chronic pain might give you the reputation of being lazy, a whinger, a hypochondriac or a party pooper, and quite frankly it is boring to defend yourself against that, but I am truly done.

This time last year I applied for universities but felt pessimistic about what the future would be like living like this. Today I am studying a subject that gives me purpose in a city I love. The list of things I appreciate about my life and where I’m at is endless, and thankfully I’ve reached a point where I can truly appreciate how lucky I am. But every day is difficult, a balancing act I often feel I’m losing. If it’s not my body it’s my mind, or both, or people around me not understanding, or explaining for the thousandth time what those with endometriosis and chronic pain have to deal with.

Through here I will continue to write openly and honestly about handling a difficult set of circumstances. It is hard, an uphill battle where all you need is good people, empathy and a never-ending supply of shitty TV and chocolate on those bed-bound days and the knowledge that there will be better days, even when it doesn’t feel like it.

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Thinkstock photo via styf22.