It’s HS Awareness week – the perfect time to remember that you are so much more than your disease.
And, that’s true whether you suffer from HS or from some other affliction…
Don’t know what HS is?
Hidradenitis Suppurativa (HS)/Acne Inversa:
A chronic ‘orphan’ auto-inflammatory skin disease.
Skin lesions develop as a result of inflammation and infection of sweat glands. This condition features pea- to marble-sized lumps under the skin that can be painful and tend to enlarge and then drain. They usually occur where skin rubs together, such as in the armpits, groin and buttocks. It causes long-term skin inflammation and can be extremely painful.
Despite knowing that I am so much more than my disease, I’m not a big fan of having my picture taken. (<– understatement!)
Having said that, when it comes to talking about Hidradenitis suppurativa (or HS), I feel kind of compelled to share. Because for years I never talked about my crazy-hideous and painful skin affliction. I hid it from everyone. And I tried to make myself small. And that included having my picture taken.
Because I was ashamed.
“I’m not lost for I know where I am. But however, where I am may be lost.”
― A.A. Milne
It was only when I experienced the healing effects of the diet and lifestyle changes I made following the AIP framework that I began to realise that not talking about my HS was actually harming me. It was preventing me from taking part. In life.
And, so we’re clear, this realisation didn’t happen for me until I was in my forties! I’m a late bloomer!
It was this realisation that had me start to talk about my ‘stuff’. It was this realisation that had me take personal responsibility for how I choose to live. And, it was precisely this realisation that had me retraining to become a health coach. Because I don’t want anyone to feel the sort of shame I experienced. At least, not if I can help prevent it!
Of course, I know that HS isn’t the only hideous affliction out there. The many faces of chronic disease are on the rise, in all their iterations.
It’s just that HS is the one I have been up close and personal with for well over half my life.
And, despite all the shizzle – the pain and the suffering that HS has given me, it has brought me good things, too.
Living with a chronic illness is a bloody complicated experience, filled with ups and downs. Some days you feel strong. Others, you barely have the strength to get out of bed.
But allowing your disease to define you is not the answer. I promise. You are so much more than your disease.
You are so much more than a condition. More than a collection of symptoms, of physical aches and pains, of psychological and emotional effects from your disease. You are not defined by your diagnosis.
Your body is incredibly complex. It is capable of so many truly amazing processes and functions, most of which you are wholly unaware of and performed in spite of this lack of consciousness. Without you having to do a thing, your body is in a state of constant growth and regeneration. And, you can choose to support this with the diet and lifestyle choices you make.
Never forget that there is no one else quite like you on the planet. You are a completely unique snowflake.
And, who you are is bloody fabulous.
Some of my suggestions for becoming more you…
Accept your disease
But only as part of who you are as a whole, not the entire kit and caboodle.
Accepting means making choices that serve you by weighing up your options. It means developing self-compassion; showing yourself the same sort of love you would your best friend.
Accepting means doing the emotional work needed so that you can live your life on your terms. Sure, it may not look exactly as you had planned in your head (but it rarely does, even for those without chronic illness).
Become an expert
Nobody cares as much about your health as you do. It’s both healthy and desirable to stay on top of the latest information and research about your disease.
Keep a food and mood diary. Learn your triggers, understand your body’s reactions. Have faith in your instincts when making decisions.
Don’t let health professionals define you by your disease, either. You are a person affected by a disease, not simply a disease itself.
Take personal responsibility
Personal responsibility is the idea that you choose, instigate, or otherwise cause your own actions. While you had little control over the onset of your chronic illness, you do have a choice in how you choose to respond to it.
HS is a pretty hideous affliction. It’s certainly not something I would wish on anybody. But, I know that if I choose to spend my days asking “Why me?”, my life will quickly become one of despair.
Learn the art of the pause
When you suffer from any sort of chronic illness, it’s very easy to experience overwhelm. It often hits you when you least expect it.
My AIP Mentorship group were instrumental in developing the idea of space, grace and pace. It’s a little mnemonic to help you remember to pause:
- Gift yourself both time and space to digest and process
- Set an intention for navigating your day with grace and ease*
- Learn to pace yourself
*we’ve abbreviated this to ‘grease’ in AIP mentorship!
Build a network
There is a tendency for those of us who suffer from chronic illness to hide away and while understandable – we are at our most vulnerable, after all – this is not helpful and may even contribute to our disease.
Human beans are community-driven creatures and social withdrawal has been shown to be a predictor of shorter survival in those who suffer from chronic disease. Loneliness is an actual driver of autoimmune disease.
It takes a leap of faith to open up to those who love you, but I encourage you to give it a go. It can be a deeply cathartic process for all involved.
In addition, look for local support groups made up of people who know exactly what you are facing and feeling.
If you suffer from HS and want to connect with a fabulous bunch from around the world, The HS Diet Connection is a great Facebook support group.
Have you got any strategies that have helped you become more than your disease?
More HS-related posts:
If you’re following the AIP framework and need a little help in believing that you are SO much more than your disease, why not come and join us in AIP Mentorship?