Welcome to the first official instalment of Chronic Confessions! If you’re not too sure what this series is, you can read my introduction post explaining all here. Our first guest of the series is the fabulous Alessia who lives with chronic colitis with secondary arthritis and fatigue, asthma and non-diabetic hypoglycemia and migraines. With also a possible case of endometriosis but currently under investigation. She has bravely and kindly agreed to tell her story here today. Without further ado…
You And Your Condition
Tell us a bit about yourself and interests!
I live in Croydon but was born on the shores (not literally) of Lake Como. I have a post-graduate degree in history and have my own business as a designer (mostly interiors but also floral and events). I have a passion for volunteering and help out the Ethical Brand Directory with running their events and host a podcast called Good Conversations for a charity called Good Works. I’m also a leader in training with Girlguiding and part of the organizing team for the Croydon Festival of New Ideas coming in 2019.
What is your diagnosis/condition(s) and what was the process of it?
I’ve always suffered with tummy issues even as a baby, but nobody thought much of it until in late 2014 I was forced to resign from my job in a coffee shop while a student because of severe symptoms of arthritis. Suspected coeliac disease was the turning point, as I was then referred to a gastroenterologist. He connected the skin symptoms and the joint inflammation and my life-long anemia to my abdominal issues and the rheumatologist agreed it seemed likely. As for asthma and hypoglycemia, they were caught earlier, although not without drama and a doctor ignoring a clear diagnosis because he insisted my breathing issues were due to being a bit overweight when I had two full blown asthma attacks only contained by the fact my mother also has asthma and was there to give me the reliever inhaler when I couldn’t breathe!
How long did the diagnosis take and at what age did you receive it?
I was 21 when the hypoglycemia was first spotted, 24 for arthritis, 26 for asthma and 28 for the formal recognition of my bowel issues.
What were your initial feelings following diagnosis?
If I am honest, it was anger. For years all of my issues were dismissed as poor lifestyle choices and being overweight when the weight gain was a result of the increasing issues (especially some of the prescribed medications!) instead. Then it became relief that at least I had less to fight with doctors moving forward (although I still dread appointments).
Do you believe you have any other undiagnosed conditions?
I have been seeking for years to have a diagnosis for a range of symptoms in my reproductive system which I suspect is endometriosis due to an event in the past when I was referred for a cancer check up following a gyno spotting tissue growing in the wrong place in my womb. The symptoms fit the description but I never convinced a Dr to refer me for the right examination.
What are the symptoms of your condition(s) and to what extent do they affect your everyday life?
On most days I have mild symptoms so while I am never free of them, I don’t always find myself bed-ridden and unable to do anything for myself. However, I still have to pay attention to what I eat, had to change what I wear to accommodate the symptoms, and get used to a less than pristine living space every so often.
Is there a cause for your condition(s) or is it currently unknown?
There are different causes for it, but we don’t really know about my specific case.
Have you had to undergo any difficult procedures or surgery and has it helped?
Luckily not, a few uncomfortable tests but compared to everyone with the same conditions I had it pretty lucky. It puts it into perspective because compared to a healthy person I have it quite bad.
Life With Your Condition
Are you on medication for your condition(s) and do you get any side effects with it? How do they affect your life if so?
I have some prescriptions which I try not to rely on too much if I can manage milder symptoms without because I had bad side effects, especially weight gain and depression but also medications for one issue causing as side effects the symptoms of another.
Are there any known triggers that set off a flare or make your condition(s) worse?
I keep a diary to try and investigate that, but so far I’m more clued up about what triggers my migraines than everything else.
Would you say you have a good support network and a designated person/team to help you with your condition(s)?
I have a very supportive fiancé and parents who are always trying to have me get better medications or a more conclusive diagnosis even from a different country from where I live, but I haven’t found much support within the health system.
How would you say your condition(s) has affected the relationships in your life?
Most of my friends accept that sometimes I just can’t do things, other people drift away because they can’t deal with it, and I’m lucky to have found someone willing to take this on for the rest of his life and making it his mission to take care of me.
Would you say it has affected your goals in life? If yes, in what way?
Yes. I ended up starting a business when I had no ambition to have this level of responsibility, and it took a toll on my academic career as well.
Would you say it has negatively affected your mental health? If yes, how has your experience been with that?
I go through a lot of very low spells when I flare up and I find myself unable to keep up with the things I want to do, and I feel like a failure.
What lifestyle changes have you and people around you had to make to accommodate your condition(s)?
Very little, just putting up with a messy house if I’m home alone for a long time (I’m in a long distance relationship), and keeping money aside for Uber journeys and take aways when I can’t cook.
Last But Not Least
Do you have any advice for newly diagnosed people with your condition(s) or a chronic illness?
I will not beat around the bush, changing circumstances can be hard and there is no shame if we need to grieve the life we had before, but we must strive not to make our condition become the centre of who we are and not forget the amazing person we are, or see it as something we were before. It’s also difficult for someone as independent as me to learn to depend on someone’s help, but it’s also rewarding if you have the right people around it. I don’t always feel that way but the times I want to change my life to have an easier one are fewer and fewer as time goes on and I adapt and find ways to cope.
Lastly, tell us something positive that keeps you going. A quote, a song, anything!
I’m Roman Catholic so I take great comfort in my faith, the community it opened up to me as well as the Scriptures and Sacraments themselves.
Thank you ever so much to Alessia for being the first feature of the Chronic Confessions series! If you would like to connect with or follow Alessia, you can do so on these links: Blog / Twitter / Instagram
’Til Next Time,