Helena’s Journey with Crohn’s Disease: The Chronic Diaries

Where are you based?

I’m based in the east of Ireland.

What chronic condition(s) do you have? Please briefly describe what they are?

I have Crohn’s, which is an autoimmune condition. An autoimmune condition is where the immune system attacks something (ie a body part) that it shouldn’t. In Crohn’s, the immune system attacks the digestive system.

What symptoms did you deal with before you were diagnosed?

I was quite unwell before I got my official diagnosis. The main symptoms I had were fatigue, extreme weight loss, no appetite, anaemia, night sweats, nausea, mouth ulcers, and diarrhoea.

How were you diagnosed? What was your journey to diagnosis?

I was officially diagnosed with Crohn’s in March 2014; aged 15. I had initially put my symptoms down to stress so I didn’t visit a doctor until I was very unwell. The GP I had seen thought I was coeliac, but when the test came back negative, she referred me to see a paediatric gastroenterologist. That appointment was months and months away and I became too unwell to wait any longer, so I went to the A&E department of a hospital. They admitted me but didn’t do much else unfortunately. A few days later I was transferred to another children’s hospital where they correctly diagnosed me, and began treatment.

Did this journey have an impact on your daily life? Eg, dropping out of college, quitting your job/getting fired? etc.

Getting diagnosed with Crohn’s had a massive impact on my schooling. I had missed more days than I had attended that year. This pattern continued on for the next few years as I tried out various medications, hoping to find a combination that would put me in remission. Between sick days, hospital appointments and having tests and procedures I was absent quite a bit, but thankfully I was able to keep my grades up and I left school with brilliant exam results and got accepted into my first choice of university.

Are you on any medications?

Currently I am on Amgevita (adalimumab) injections weekly, which I administer myself at home. I also take Imuran (azathioprine) tablets daily. Both of these are immunosuppressants, to calm my immune system down and stop it attacking my digestive system. I also take a daily probiotic & supplements, depending on what I’m low in.

What side effects do you encounter, if any?

Luckily, I haven’t had too many negative side effects from these medications. I did experience headaches and dizziness when I had first started Imuran, but these have eased now thankfully. I have my bloods monitored regularly to keep an eye on any possible side effects these medications could cause.

What symptoms of your illness do you deal with on a daily basis (even when on medications)? How do you deal with these?

When even in remission, I still experience symptoms daily. The main one that I struggle with is fatigue and some days it can be crippling. Pacing myself does help with this but it doesn’t erase it completely.

What occupation do you have? How does your illness effect your job/employment?

I have recently started a new full-time job in the finance sector. It’s a struggle to balance working full time with a chronic illness and I find myself wrecked every day. But I’m hoping I’ll adjust and find some more energy.

How does your illness impact you mentally?

Having Crohn’s has definitely impacted my mental health, but I’m naturally quite a positive person and I always try to look on the bright side and make the most of it.

How do you keep motivated dealing with your chronic condition in your daily life?

I’m extremely lucky to have an amazing support system behind me. My family, friends, and boyfriend are just brilliant and they motivate me to keep going, especially on tough days.

Is there any advice you would like to give to people who are on their chronic illness journey?

Allow yourself to feel all the emotions: grief & mourning for your old life are normal. Try to avoid toxic positivity. You don’t always have to be grateful that it isn’t worse.

How do you encounter people having your illness? Do people understand? Are they ignorant? What level of difficulty do you have with this, if at all?

Most people are very understanding when I tell them I have Crohn’s. Sometimes there is confusion around it because it’s an ‘invisible illness’. You can’t necessarily tell that someone has it. I have had some people respond with, “oh, but you don’t look sick”. Or when I explain that I struggle to gain & maintain weight, “I wish I had that so I could lose weight!”

Is there anything you want to say to these people? Or the general public who do not have a chronic illness?

I wish I could say to everyone, “be kind, always.” You never know what someone is going through! Someone could be having a terrible day health wise and they are trying their very best, so please do be kind.

Want to share your story?

Get involved in The Chronic Diaries! Email me at: chronicexposurenetwork@gmail.com or message me on Instagram at @chronicexpsoure.

I would love to help you share your story and raise awareness for Chronic Illnesses of any type!

Chronic Exposure Network