How A Medication Side Effect Changed Her Life | Claire’s Story
A Series of Interviews With Chronic Illness Patients, Uncensored and Raw Truths About Life With Chronic Illness.
If you have a chronic illness, you know that each story is unique, including yours. I’m always telling my clients ‘No one knows you better than YOU’. Of course, in this experience, there are some very difficult experiences shared by many of us: at some point a doctor has probably told you ‘It’s all in your head’, You’ve likely been dismissed, your symptoms minimized and may have been made to feel as if your body is lying to you. It’s important to hear from others who might be going through something similar, to see how we are all different and most of all – to know we’re not alone in this struggle looking for validation, treatment and support in getting our lives back.
Keep reading to learn how our next guest Claire wants us to know about living with chronic illness…
How A Medication Side Effect Changed Her Life | Claire’s Story
Q: What brings you to the realm of chronic illness? How did it all start for you?
A: “Chronic illness began for me after an adverse reaction to a medication for a condition, Raynauds, that I have had since childhood. I became quite dizzy, off-balance, fatigued and felt generally ‘off’. After a lot of going back and forth to my GP, and finally seeing a specialist doctor, I was diagnosed with vestibular migraine and then classic migraine. It seems as though the adverse drug reaction triggered the migraine, and other conditions, although we can’t be sure. Over the years I have also been diagnosed with dysautonomia, hypermobility EDS, mast cell activation syndrome (MCAS), fibromyalgia, interstitial cystitis and more.”
Q: What’s the most challenging aspect of life with a chronic illness?
A: “The most challenging aspect of life with chronic illness, for me, is wanting to be able to do certain activities but my body not letting me. I would love to be more active than I am, work more and see friends and family more often. If I try to do too much my symptoms flare and the fatigue, dizziness, migraines and other symptoms become far more troubling. It can be difficult to explain to people why I look well, but aren’t able to do as much as they can.“
Q: What has been something rewarding or positive that has come from your chronic illness experience?
A: “The most rewarding thing that has come from my chronic illness experience has been meeting so many lovely people through my Instagram – @through.the.fibro.fog – who are also living the chronic illness life. There is such a positive and supportive community online and I am so thankful to have become a part of it. Having friends who understand the good days and the bad is so helpful, and it is great to be able to chat about daily life with chronic illness, share experiences and even find the funny side of it all.”
Q: What are some things you wish people understood better about your illness?
A: “I wish people understood that looking well doesn’t mean that you are well. Invisible illness is challenging to convey to others, and people find it difficult to understand. I also wish people better understood that symptoms go up and down from one day, even one hour, to the next. Some days I am well enough to exercise, and even go for a run, while on other days that is impossible and I have to have a quiet day to let my body rest.”
Q: What are some of the best techniques or strategies you’ve used to manage symptoms?
A: “For me personally, diet, exercise and rest are the biggest priorities. I try to eat a healthy diet full of fruit and vegetables and find that I feel my best when I do so. It really helps my MCAS symptoms in particular. Exercise has really helped me increase my strength and stamina, and has been really positive for improving my dysautonomia and vestibular symptoms. And finally, rest – something that I still struggle with guilt over, but it’s vital to managing symptoms. My body definitely needs ‘down-time’ to watch a film or read a book and just recuperate from the day.”
Q: Have you ever seen a therapist to help with your illness experience? If so, how has therapy helped you?
A: “I did see a therapist many years ago. It helped me understand that I need to be kind and compassionate to myself, and that I need to prioritize what my body needs.”
Q: What advice would you give someone who recognizes something might be wrong but still hasn’t received a diagnoses or has just received a new diagnosis of chronic illness?
A: “My advice would be to persevere with the medical system if you feel that something is wrong but don’t have a diagnosis. Trying to find the right doctor for you can be really challenging, and I definitely had to hunt around for mine. Don’t be afraid to change doctors if you aren’t happy, or ask for referrals to specialists.
If you have just received a diagnosis then I would try to become informed of your condition, and any medical or lifestyle changes that may help with your symptoms. But use reputable resources! There is a lot of mis-information online so stick with known organisations and resources. Personally, I have found changes to diet, exercise, sleep and supplements to be very helpful, but be guided by professionals. Asking for a referral to a dietician or physiotherapist may be very helpful. And put together a support system that incorporates friends and family, and consider joining online forums, Instagram or facebook pages so that you come to know people who truly ‘get it’. I honestly wish I had done that sooner!“
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Learn more about Claire:
“My name is Claire, and I live in London in the UK. I am diagnosed with a long list of medical conditions and so definitely know about living the chronic illness life! You can find me at @through.the.fibro.fog on Instagram, and on my blog www.throughthefibrofog.com which offers tips and tricks for living with chronic illness, and simple but delicious low histamine recipes. Always lovely to meet new people who have similar experiences with chronic illness and all that it entails!”
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