The Importance of Focusing on the Positives in Life With Chronic Illness

When you have long-term health issues, I’ve often felt the hardest thing to cope with is that statement the specialist would make: “The tests have all come back negative.” For them it was good news, for me it was devastating and made me feel like a faker and like they didn’t actually believe I was ill. So, when they finally say, “We’ve found it,” there is this massive sense of relief and undeniably a feeling of “It’s not ‘all in my head.’” The only issue is that I assumed in my head that the specialist actually said, “We know what it is and here is a magic cure. You should be back to pre-illness you within a month.” Alas, that is rarely the case.

You may spend years fighting to be heard so you can get on with your life, dreaming about a time when you can walk up stairs, drive a car or have a full-time job and still have the energy to cook the evening meal – only for the reality to not be so miraculous.

I have lupus, Raynaud’s, Sjogren’s and fibromyalgia. That’s what I started with, but thanks to the trial and error approach of doctors who didn’t seem to care that my insides clearly couldn’t cope with the medication, I now have osteopenia (one down from osteoporosis), a hiatal hernia, gastroesophageal reflux disease (GERD) and a myriad of other fabulous side effects. When I say fabulous, can you tell that’s sarcasm?

As a coach, author and speaker who specializes in helping people accomplish more, overcome adversity and achieve big, my lifetime ambition was to write a book, so when I was asked to write a book by the UK’s leading non-fiction publisher I was over the moon. Well, I’d only wanted that goal from the age of 8!

The thing was that as the book contract came through the letterbox, the deadline for the first draft was set and I banked my first check, the specialists decided to take me off the medicine that had been helping me to “see what would happen.” Since the previous four years had seen me being raced to the emergency room looking like I was having a heart attack, we didn’t need a crystal ball to see where this was going.

However, I don’t know if you’ve noticed that for every doctor you could kiss and hug and grant a thousand genies’ wishes to, there are a good few who don’t listen to a word you say. And this was what happened on this occasion. As my health deteriorated and the exhaustion and pain were taking over my existence, this doctor refused to put me back on the medicine that had given me some resemblance of life and would only treat one of the symptoms. A nice addition to everything else that my autoimmune diseases cause is severe migraines. I was in labor for 32 hours with my son and only used breathing exercises before having to have an emergency caesarean thanks to the curve in my spine, and that was not as bad as the migraines I experienced.

Perfect timing with a book deadline looming! It got even more “fun” when the specialist agreed not to treat the lupus but just the migraines. The drug he prescribed me lessened the migraines but didn’t fix them, caused horrific nausea (turns out I can’t even look at green tea on topiramate!) and I was lucky if I could eat about 300 calories a day since my stomach was so upset. On top of this, it felt like someone had scooped my brains out with the simplest of words being missing from my vocabulary (yes, perfect timing with a book to write!). And that is not the worst of it.

(I feel this should come with some health warning or shock status, so if you are easily upset or currently eating, I would not read any more of this article.)

As a professional speaker, do you know how entertaining it is to need the loo 15 times an hour? I can tell you, it’s not. It’s incredibly embarrassing and I’d like to say it gave me bum cheeks like steel; however, I don’t think that was the case. So why do I share such a horrendously embarrassing story with you? Because long-term illness has so many layers and often, half of them are not dealt with by specialists or are too delicate or embarrassing to discuss with your friends. Can you imagine it? Out for a meal with your best friends and you start discussing your marathon bowel movements! You are not likely to have those friends for long.

So why do I share my humiliation with you? Because honesty breaks down barriers, it stops us from feeling alone and helps us understand we can get through this. I learned to tell myself a few things that would make me laugh, for instance:

• On the occasion I walked past the business woman for the 11th time to the loo, I retorted, “I love the facilities in this hotel, so opulent!”
• On another occasion when I’d learned that spare underwear was an embarrassing and yet essential must, I found myself saying, “I knew those didn’t go with this outfit.”
• And when I found myself in a beautiful five-star hotel unable to enjoy the seven-course French banquet, I joked that this was the best diet I’d ever been on!

The point is that we have to learn to laugh, and we have to learn to concentrate on what we can control, not on what we can’t (quite literally!). When we do this we are able to stay positive and focus on being happy, not necessarily perfect.

It was less than six months later as my weight fell off that they found the rare antibody that hid my lupus and started me on the right medication. And again, I found myself rejoicing. “Woohoo!” I thought. “No more embarrassing rest breaks and knowing every restroom between home and any clients.”

Alas, not quite the case. You see, there is really no magic medicine (except maybe love which can always make you feel good if you let it), and with the injections of a chemo medicine (methotrexate), I lost my passion for exploring every toilet on the planet and swapped that for one hour of sleep a night, weight gain and mood swings that Frankenstein would be proud of.

But I don’t concentrate on that.

I focus on the fact that I can drive anywhere I like. I can work all day and still have the energy, appetite and interest in cooking for my family, I don’t have to turn down every invite for fear I won’t be well enough and I can have a life. Yes, I’m a bigger version of Mandie Holgate; however, since I have internal confidence that does not bother me and my loving hubby says he doesn’t notice – if anything it just makes certain, erm, assets more enjoyable.

So as you fight to find a quality of life… As you challenge doctors to find solutions… As you journey from one medication and its joyous side effects to another, dreaming of being cured and running along a beach in slow mo with the perfect life… decide to concentrate on what matters:

• How awesome is it that we have these doctors?
• How amazing are blood tests to find these rare illnesses?
• How lucky are we to be loved regardless of what we look like, but for who we genuinely are?
• How amazing is it to have medications that give us life?
• How grateful are we for the life we have?

So when it’s tough, reframe what you are thinking and concentrate on all you do have, even if that is a fascination with the toilets of the world!

So when I ask “Daddy or chips?,” this is a game our family has played around the dinner table for years. A fun way to establish what is really important in life. I will never forget my daughter when she was 3 thinking long and hard on whether she could live without Daddy or chips (Daddy came a close second) and it reminds me of the “fun” of side effects and symptoms. Choose what to concentrate on, and don’t let that be the negative, because that will only help to make you stressed and that in turn can play havoc with the side effects and illness, so you really do have to choose what to concentrate on, and make sure it includes a good few laughs!

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