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10 Years Later: What I've Learned Since My Vasculitis Diagnosis

Ten long years. 10 years of hoping I will improve. 10 years of taking serious medications with serious side effects. 10 years and somehow, I don’t feel I have progressed physically. I haven’t gotten “better,” but I am better at managing my condition and my life.

It all started with a toothache and a tiredness that sleep could not cure. The removal of all my wisdom teeth, three rounds of antibiotics, and numerous visits to the dentist later, and I heard the words that I will never forget: “Something is wrong, and you need to urgently see your doctor.” Thanks to my fab dentist (who I’m still with now), that is what I did.

But getting a correct diagnosis is not always as simple as seeing your doctor for some tests. And so, several weeks of visiting my GP and having blood tests led to an emergency stay for two weeks in the hospital. Then countless doctors and endless tests later, and I received a diagnosis: microscopic polyangiitis, but I was then later diagnosed with Wegener’s vasculitis.

It wasn’t the outcome I had expected, but what was happening to me was still not clear. When one doctor questioned my symptoms and another doctor proved me right, I learned valuable lessons. Ultimately, you must look out for yourself and find experts you can trust. I have learned a lot in 10 years, and maybe I have progressed more than I think. I have a team that I trust, I have some stability with my health, and I have family and friends who understand that sometimes, my illness is too much for me, and I need to hide away. But overall, I have a new life — one that wasn’t planned and one that is restricted in some ways. However, it is a life filled with love and respect. The new version of my life is quite lovely, so I think I will keep it — medications and all.

It’s called “chronic illness” for a reason.

After my diagnosis, I thought I could battle through. I thought I would win. I thought I was invincible. Unfortunately, I couldn’t win, and I was so far from invincible. 10 years on, I am still battling and visiting hospitals monthly, but I am also still hopeful.

I did not understand the words “chronic illness.” When a colleague asked me how I was managing, and I said my illness was still dragging on, his response floored me. He simply said, “Well, it is chronic.” It was such a straightforward comment, but it really hit home. Did I think my illness would just go away? Had I not believed that it would stay with me for the rest of my life? Had I just ignored reality? Am I still ignoring it? I try to forget that I have a severe illness. I try to “prove it wrong,” almost as though if I keep going, somebody will soon tell me it was all a joke and that I am OK.

The COVID-19 pandemic changed my life.

The last few years have been tough for us all. The COVID-19 pandemic changed many things. For me, it felt like a strange clinical trial — I got to remove all the travel and interactions with people and see what happens to an immunosuppressed person with an autoimmune disease. The lack of infections allowed me to drop my medication dose. It also allowed me to work alongside colleagues as equals and not as the only one who was not physically in the room. The pandemic meant I had the energy to be with my family. The world became as restricted as I have been, and it leveled the playing field.

Not anymore, though. As the world becomes “normal” again, I become “abnormal” again, and the pressure to join in returns. I have had a number of common infections, and so my medication dose went back up. The large “clinical trial” that has been my life during COVID-19 has given me resounding answers to some of my problems. But solving these problems is not financially straightforward in the real world.

Thank you for all the support.

The past 10 years have been tough — full of knockouts and disappointment. But they have also been full of laughter, love, and special people. My family has been amazing. Even if we do lots of shouting some days, when it matters, we are a tight unit, and we deal with everything together. My family members are my strength, and I wish I could repay all the support, love, and kindness they have shown me.

To the friends who came to the hospital with me or looked after the girls for me when they were little, thank you. To those who have listened to me cry even if it did not make much sense, thank you.

My online friends deserve a “thank you” too. Since writing the book, the support from Instagram, Facebook and Twitter has been critical. Online friends, you may understand me. You are often awake at the same time as I am when I cannot sleep, and you may also know how scary and uncertain this disease can be. Thank you.

To my boss and colleagues, thank you for all the encouragement and support, positive words, and understanding when I just couldn’t be in the room. You have been the most fantastic company for the last 10 years.

George, the black Labrador and Burt, the cocker spaniel have helped me too. George and Burt, you will never know how much you have kept me moving. The movement has helped me avoid diabetes, brittle bones, weight struggles, and depression. Our walks help me both physically and mentally.

This is what the future holds.

Unfortunately, the medication that has given me some stability has now caused the doctors to think it has brought on ulcerative colitis, another autoimmune disease. This disease affects my bowel and brings more inflammation, more new investigations, more new medications, and yet another thing to learn to live with every day. But I will manage. The past 10 years of medications have caused osteoporosis in my back and hip, medication dependency, and weight changes. The fatigue is constant, and when I get to the end of a working day, I am lucky if I can speak to my family.

I keep going, though. I am proud of how my family and I have all dealt with this life-changing diagnosis. I am proud of our resilience and ability to fight. I am also proud of how my children view this world with kindness, and I know that they will make a real difference as they turn into extraordinary young ladies.

Vasculitis forced me to step back, look at my world, and focus my energy on the things that really matter. For now, I celebrate being alive, and I thank everyone who has helped me stay that way. It was not so long ago that a diagnosis of vasculitis was an immediate death sentence. I am grateful for the clinical advances and the care I have been given. Now can someone please invent a cure?

Getty image by Westend61.

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