What I've learned as a 26-year-old living with chronic pain.
This is what people don't tell you about living with a chronic illness at a young age.
A few months ago, my feet began to hurt.
At first, I thought that it was just from standing a lot for work, but then it continued to get worse. The day the pain spread to my hands, I knew something was wrong.
But it was when it spread to the rest of my body — my shoulders, elbows, knees, and ankles — that I panicked. What was happening to me? All of a sudden everything hurt, all the time: sitting, standing, walking. At first, lying down was my only relief. But then the pain got so bad every joint would throb, no matter how comfortable I was.
Within two months, I went from being a personal trainer, strong and fit with a passion for hanging upside down and balancing on my hands to not being able to dress myself, cut my own food, or tie my shoelaces.
Rheumatoid arthritis is an autoimmune disease that causes inflammation and swelling in the joints. It’s extremely painful. Around 10 million people in the U.K. have arthritis, 700,000 of which have RA. It is most common in women aged 45-60.
This is the third autoimmune condition I’ve been diagnosed with (I also have celiac disease and Berger’s disease). That’s the unfortunate thing with autoimmune conditions: Once you have one, you are more likely to develop another.
RA is often called the silent illness because people with RA don’t look sick.
I’m a generally positive person, but I’ll be honest: These last few months have really challenged me.
Every day is a constant struggle as I try to move through life in constant pain. It’s a dark and isolating place to be. On top of the physical pain, there is also the fear that my body is changing, that it’s completely out of my control, and the realization there are some things I will never be able to do again.
I’ve been in some dark places. I’ve felt sorry for myself. I’ve spent whole days in bed, I've used alcohol to numb the pain. It has been a process to come to terms with these changes taking over my body. But every day, I wake up and fight this battle again, getting stronger each time as I learn to accept the hand I've been dealt.
These are the lessons I have learned from living with chronic pain:
1. There is a time and a place for modern medicine.
While I am a huge advocate for natural health, we are so lucky to live in a modern world with amazing pharmaceuticals. I wish I could tell an inspirational story about how I rejected the drugs and decided to cure myself naturally, but it is so far from the truth. After the pain that I was feeling, when the doctors offered me a chance to have even half of it taken away by a steroid injection, even after listing the plethora of potential side effects, I jumped at it without hesitating for a second. As the kind of person who would never even take meds for a headache, this was a tough pill to swallow. Sometimes your values will be challenged as your circumstances change.
2. It’s OK to ask for help.
I have always been stubbornly independent, never wanting to rely on anyone, priding myself on being completely self-sufficient. I’d never even let anyone open a jar for me, but oh, how the mighty have fallen!
I’ve had no choice but to put all of my pride aside as I begin to require assistance for almost everything. Now I understand the importance of having a strong support network and the gratitude that comes with having around me people I love who would do anything to help me.
3. Self-care isn’t an option; it is a necessity.
I used to race through life, with clients morning and evening, full-time PR work during the day, pole dancing, yoga, travel, writing, friends, family... I used to feel that any moment I wasn’t productive was wasted. I even used to meditate with the sole purpose of being more productive!
When I was first diagnosed, I got so frustrated with myself for not being able to do as much as I used to do. Now, I have learned to accept my situation, and I understand that I need to look after myself. I put myself first because I have to, and I listen to my body. If I need to spend an afternoon in bed, that’s what I do. And it’s OK. If I need to turn away a potential new client because I don’t have the time or energy, that’s fine too. You can’t do it all. Make yourself a priority. Turns out, resting is pretty f*cking awesome.
4. Positive thinking is not always the answer.
Instagram mantras like "positive mind, positive life," "I’m in charge of how I feel and today I’m choosing happiness," and "wake up and be awesome," may seem inspirational, but I’ve learned that life is not so simple.
While I see a huge difference in my pain when I am in a good mood versus when I’m in a bad mood and I’m a big believer in the mind-body connection, it only goes so far. Telling someone like me to "think positive" or telling me that the reason this happened to me is that I poisoned myself with negative thoughts is insulting and so far from the truth.
Sometimes I wake up feeling like crap. I have a crap day. The people around me are being crappy. And that’s fine. Then I go to bed and hope that tomorrow will be different. It’s a new day.
5. Chronic pain can be extremely isolating.
People with RA are twice as likely as others to develop depression, and up to 4 of every 10 people with RA lose their job within five years due to their condition. 1 in 7 give up work altogether within one year of their diagnosis.
When I explain my illness to people, they nod and offer sympathies, but they don’t really get it. The most valuable thing for me since being diagnosed has been to connect with other young sufferers, to know that I am not alone. There is unique solace to be found in someone else who also has issues pouring a cup of tea and who fully understands my fear of being locked in a public bathroom as my hands struggle with locks and handles.
6. It’s never too early to start meditating.
Living with chronic pain conditions can take a huge toll on your mental health. For me, years of developing a meditation practice has made a big difference in my ability to handle difficult situations. It has been vital in allowing me to come to terms with my condition as well as staying positive, overcoming anxiety, and making the most out of my situation.
And meditation is not just for people with illnesses; it’s an amazing tool for everyone! Stress and anxiety play a huge role in developing and worsening chronic illnesses. Meditation is a way of working on your well-being at the best of times so that when challenges come along, you have tools to help you gain control.
In the end, I’ve realized that my struggles have made me stronger.
It sounds cliché, but I can’t even explain how true this rings for me right now. Even when I’m feeling my worst, I’m constantly realizing what I’m capable of. Every time I conquer yet another day of pain, I remind myself that I can get through this.
And if I can get through this, I can get through anything.