Pain and perfection.
This spring I have been undertaking a number of walks across various British landscapes to gather data for an art project. My initial plan was to walk for 3 months, wild camping where possible and recording data about the weather, landscape, flora and fauna of the world around me. It was a great plan, exciting and challenging. I came back with good data, lots of ideas and a clearer sense of how I might take the project forward.
I knew, kind of, that there was going to be some degree of physical difficulty for me doing the walk. I'm 55 years old, overweight and I have inflammatory and osteoarthritis. But, sheesh, if you want something you just have to go out there and get it, right? I walk between 3 to 5 miles every day anyway, so I hoped that the extra daily distances I'd be undertaking for the project would just make me fitter.
We live in a culture that tells us that we are ultimately responsible for our own physical health. We are bombarded with information that tells us that if we eat well, get enough exercise and sleep we will be healthy. There are websites and Instagram feeds galore devoted to 'clean' eating, to yoga, outdoor adventure and fitness inspiration. I fall for that shit all the time.
I've been vegetarian for a few years, but I've always been fat so I've also done every diet - keto, raw, low carb, calorie counting, Slimming World, 5:2 and 800 calories a day. I've done body building, running, swimming, pilates, yoga. I love water and have tried body boarding and surfing. I had this dream of myself as a fit, tanned, strong woman. I wanted muscles! I wanted to be that awesome, adventurous, outdoor gal that I see in my feed. But none of the exercises I did really ever made me feel much fitter. I rarely seemed to reap any visible benefits from the activities that I was doing. Usually, I'd start a new fitness regime and keep it up for a few months before an 'injury' stopped me. I often seemed to be struggling with some pain somewhere or other, a pain that seemed to move about my body so much I thought I was just a really intense hypochondriac. And I was lazy! Many days I just felt 'lazy' and couldn't find the energy/be bothered to keep up the new regime.
I believed that my failure to be that fit, tanned, strong adventuress was my own fault. Growing up in a family that values 'toughing it out,' probably contributed to that feeling too. I totally bought into a dialogue that said you had to be strong and tough and that physical pain or illness was a symptom of your own weakness as a human being. Are you ill? Eat better! Are you fat? Eat less! Are you sad? Get a grip! Are you a less than perfect person? Well you should just try harder!
Last year I was diagnosed with psoriatic arthritis. It is likely that I've had psoriatic arthritis for most of my adult life, although my symptoms had been misdiagnosed at different times as ME, being overweight, stress, and more recently, ageing. And to be fair to my GP, I don't really have visible psoriasis, just small patches on my elbows and scalp that had also been misdiagnosed as eczema.
Psoriatic arthritis causes pain, stiffness and chronic fatigue. It is incurable but also expresses itself in the body in waves, so that people with the condition have periods of remission when they don't feel unwell, followed by flare ups when joints and/or tendons can become inflamed and painful. Different areas of the body can be affected at different times although the most likely areas of pain will be in the hands, feet and spine. Why people get PsA is not clearly understood, but there may be a genetic and environmental component and it may be triggered by an injury or viral illness.
Getting a firm diagnosis was good in that it made me understand why I hurt most of the time and why I am so stiff. Of course I decided to ignore it as much as possible and generally just carried on as usual, guilty that I probably wasn't eating the 'perfect' anti inflammatory diet, with that quiet little inner voice nagging me that if I did yoga or a regime of daily exercise I'd get better. But basically I thought I should tough it out, not make a fuss, not give in to it, keep going, research a better diet, take control, make myself better, start a new fitness regime and finally, go for a three month walk, wild camping and carrying all my food and water.
Yeah, that went well.
The walk was amazing, beautiful, inspiring. The landscapes and wildlife I saw were so, so beautiful. I'm still travelling and walking at the moment and loving it. But I also realised that I can't do 15 mile days like the people I follow on Instagram, I never walk without pain, I'm not going to get better.
While I was out on this adventure I slowly came to realise just how disabled I really am. I guess in my daily life at home I have found a way of living that enables me to function pretty well and I'm very lucky that I have a heightened tolerance of pain. At home, even though I know I'm in pain I can mostly ignore it. But out on the walk it was very different. For example, my body is very stiff in the mornings, which at home just means I stagger down the stairs like a million year old woman, but in the tent I had to negotiate my body out of a sleeping bag and out of the tent, then onto my knees, up onto my feet and stagger off to the loos. I had to use my hands to pull my legs and feet out of the sleeping bag. It took ages and was exhausting. My feet were too swollen and stiff to put on walking boots first thing so I bought some cheap crocs to meet the day in. Sitting down to take a break was painful and difficult if I had to sit on the ground, I became an expert at scouting out suitable rocks, walls and grassy banks to sit on instead. The first couple of minutes walking again after a break were always painfully stiff, my feet blazed with a pain like fire sometimes. At first I put most of this down to age and unfitness, refusing to see that the arthritis had such a grip on my body.
At the end of the second week I hurt my rib trying to get into my sleeping bag. The week after that injury I put my back out. I spent a cold, frightened night in my tent, unable to move for hours because of the pain. The next morning was one of the lowest points of my life. This great adventure I was on was promising to collapse around me. That morning I finally had to face up to my physical disability and accept myself where I was, as I was, facing the reality of myself rather that the fantasy of what I felt I ought to be. It was one of the most painful experiences I've ever had. My back was in agony but my heart hurt more.
I staggered around Alnwick garden that morning wondering what to do. I'd got myself a bunk for the night at the hostel in Alnwick as my back was too painful to sleep on the ground again soon. I couldn't bear the thought of stopping the trip. Despite the physical difficulties I was having, I loved the walking and seeing so much wonderful wildlife and I loved the project I was doing the walking for. I didn't want to give up.
In the end I made the decision to stay with the walk, but I also came to an acceptance that I have a disability. At first a painful realisation, it has since become a positive one. I have a disability, I'm not going to get better, but I can still do awesome things, especially if I think sensibly and make adjustments for my needs. I have a feeling that if I stay with what I really am, instead of dreaming of what I'd like to be, more things, not less, are possible. Firstly, I recognised that my dream of wild camping had to die. If I hung onto that I'd end up in trouble. Instead I decided to stay in hostels, which actually turned out really well and I met some great people too. Secondly, I realised that I couldn't do the mileage that I dreamed of. So I learned to accept what my body can do. Some days five miles is epic for me, other days twelve miles is possible. Some days I can't do more than one or two.
Thirdly, I really came to understand that pain, while horrible, is really not something to fear always. One of the things I dreaded going into this trip was how I would feel if things went wrong. I hate having emotions, especially miserable ones. On that day in Alnwick I felt all the miserable ones and it turned out not to be so bad. That is, the emotional pain was bad, but I was able to think through it. It's a cliche but that pain got me to a place where I could accept myself as I actually was. So in the end I am grateful to the pain, of the body and the heart, that I felt that day.
I wonder if emotional pain is what we are trying to avoid in our culture that values so highly physical perfection and health? Of course, it is wonderful to be healthy and to be free of physical pain and if there is something we can do to help ourselves be as healthy as possible, then it's also great to have access to that information. For me the idea of working towards some ideal of physical strength and health was about hope. I might not be perfect now, but I could be perfect in some imagined future-time. Facing up to the full reality of my condition took away that hope. I'm not going to get better, although I will definitely have times when it's in remission. Facing up to the reality of ourselves is painful if that self is not what we'd like to be, or not likely to change.
It's also made me think about this whole question of our cultural attitudes to health and the dangers inherent in believing that we are totally, personally responsible for our health and fitness. This idea that we are almost to blame if we are not perfectly healthy and fit is horribly damaging. What message does it give about disabled people, the sick and the elderly? Do we believe that it's their fault for being less than perfect? Do we believe that the elderly just need to take more exercise? Do we think that they should have taken better care of their bodies when they were younger? What do we think about bodies that are damaged through pregnancy, work stress, accidents, genetic diseases, mental illness, environmental factors, pollution, poverty?
What does it really mean to eat clean and lead that adventurous, outdoor lifestyle? Who really has access to that? Is it everyone? What does it cost? How far is health and fitness about privilege?
I'm happier since I allowed myself to recognise myself as I am. Of course I don't want this pain, of course I'd love to have a fit, healthy body and I will do what I feel able to do to be healthy. That 'what I feel able to do' is important. It is kindly.
Resources for your pain:
There are some great resources out there to enable us to see other bodies being wonderful. People who are fat, disabled, or just different to us, living their lives. This isn't about that 'overcoming adversity' narrative either. Of course it can be uplifting and exciting when we see people doing awesome things, but at the same time we should not forget the millions of people who are everyday heroes, those people who overcome Everests just by getting out of bed, or making it through their front door, or getting through a day at work. Big round of applause to you all really.
Awesome/funny/inspiring people who don't look 'perfect' but are out there doing their stuff anyway:
Second Chance Hiker: https://www.youtube.com/watch?v=iVzpMDMwgVE&t=9s
Zach Anner: https://www.youtube.com/watch?v=UBL7UiX3DLI
Fat Girl Running: http://fatgirlrunning-fatrunner.blogspot.com/
The Fat Squirrell: https://www.youtube.com/watch?v=OEyQZ6OfsDU (superb episode about body acceptance)
About Psoriatic Arthritis: