Five Things I Wish I’d Known Before Becoming Chronically Ill

Finding out you have a chronic illness — one that will, by definition, never go away — changes things profoundly, both for you and those around you.

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Seven years ago, I got sick and I never got better.

What I thought was me being run down from working shifts in a hotel and overdoing it in the gym turned out to be a whole host of autoimmune conditions that had not been picked up. That was until one day I ended up in A&E as a Heart Attack patient.

At the time I was twenty five years old – terrified! But thankfully had a wonderful team of nurses and doctors that saved my life.

Following that hospital admission I was diagnosed with Psoriatic Arthritis, Asthma, Hypothyroidism (with a Goitre,) and Anemia.

Since that hospital stay, I’ve had Bronchoscopies, biopsies, CT scans, MRI scans, X-rays, DEXA scan, countless blood tests, antibiotics, anti-inflammatories, COX-2 inhibitors, steroids, DMARD’s, biologics and many, many other tests, drugs and hospital admissions.

My conditions are still not completely managed and I am currently waiting to start a new class of medication called Jak inhibitors. 

When I was originally diagnosed, I didn’t realise how much my life would change. There’s no conversation about that foggy space between the common cold and terminal illness, where your disease won’t go away but won’t kill you.

None of us know what “chronic illness” means until we’re thrown into being sick forever ourselves.

Chronic illness not only causes painful physical symptoms, but also mental ones that linger even when the disease is well controlled. There is trauma related to certain aspects of illness or treatment, and fear of outcomes like death or disability, For many people, there are financial uncertainties. Plus, there’s anxiety over loss of autonomy and control.

Chronic illness also increases the risk of depression, a 2007 World Health Organization survey  found a higher likelihood of depressive episodes among those with chronic health conditions than without.

It’s hard to be a good employee when you need extended periods off. It’s hard to be a good friend when you cancel plans last minute. It’s hard to be a good partner when you barely have the energy to get out of bed. No matter how much you try to explain, people expect you to get better — and when you don’t, they resent you, consciously or not. Some relationships end entirely, casualties of an unfair, misunderstood and often invisible illness, while some get stronger as you find your true support system.

But most significantly of all, your relationship with yourself changes. You grieve a version of yourself that doesn’t exist anymore, and a future version that looks different than you’d planned.

You might have to give up career goals, hobbies and family plans, learning a “new normal” in their place. In trauma therapy this is called ‘integration,’ the task of integrating a new reality into one’s life and worldview. This emotional work can look a lot like grief therapy for a passing loved one.

Try to be patient as you get to know the new version of yourself.

People are compelled to offer advice about chronically ill bodies because they’re convinced a fix must exist. Here are a few of the things I’ve been told, unsolicited, to try over the years: yoga, meditation, essential oils, acupuncture, CBD oil, prayer, bone broth and [fill in the blank with the latest fad]. These work great in conjunction with medical treatment — my rheumatologist recommends regular massages, for example — but the advice is offered as a cure or a better alternative to whatever I’m already doing. And let’s face it, no amount of broth is going to fix my immune system or repair my joints.

Chronically ill people research their diseases like crazy! Often trying more treatments than they can count. In many cases, great scientific minds can’t crack a cause or cure. So unless someone asks for your advice, don’t offer it – period!

Maybe it’s because I naturally have a thirst for knowledge, but when I was diagnosed, I went straight into research mode . Learning as much as I could helped me feel a sense of control, so I bought books and spent hours reading studies and forums online. I made lists of questions for my doctors, I expected my friends and family to be as gung-ho as I was, but turns out, most of them never even Googled my disease. It was up to me to learn and teach — friends, family, bosses, partners — through conversations, books with passages marked, emails highlighting new research, and social media posts.

Chronic illness is really lonely.

Loved ones try their best, but your fellow “spoonies,” as they’re affectionately called, intimately know the challenges of forever sickness and thanks to the internet, it’s easier than ever to connect with them in support groups and chronic illness communities.

It took me five years to join an online community. I pridefully thought I could go it alone, but that was like being lost at sea and ignoring a rescue ship. Now, I tell all newly diagnosed folks to join a support group right away — it doesn’t just help you feel less alone, but it connects you with resources and provides a place to ask questions and share stories without shame.

Living with chronic illness makes every day a little harder, but it also makes every day a little sweeter. Though I don’t know what my future holds, I’m overwhelmed with a gratitude I didn’t have before my diagnosis — some days I marvel at just being alive!

The challenge is steep, but the mission is to grow into this challenge, create meaning, and be the best person you can be.

Rachel x

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