My Journey with Chronic Illness
- Jun 8
- 6 min read
Written by Jenny Hersey, Life Coach and Counsellor
Jenny Hersey is a counsellor, life coach, supervisor, and critical incident debriefer. She has spent two decades in this field and works with individuals, groups, and businesses.
Chronic illness is something I have lived with since I was a teenager, and gosh, it annoys me. It is inconvenient, frustrating, and disabling at times. There are days when I feel like I can take on the world and days when I cannot leave the house. But I have had to accept it for what it is. I fought against it for over two decades, and because of that, I have spent a lot of time in hospital. In fact, I have had 11 admissions where I spent my time hooked up to an IV drip, being pumped full of steroids.
I was diagnosed with ulcerative colitis after years of pain and getting nowhere with the health care system. Ulcerative colitis is an inflammatory bowel condition for which there is no cure. I also have IBS, a wheat allergy, inflammatory arthritis, diverticulitis, and proctitis in my hips. Basically, my body is full of inflammation. I was also diagnosed with fibromyalgia, but this has since gone. I have a gastro team and a rheumatology team at my local hospital who look after me, and I have to visit them for check-ups several times a year. Oh, the joy.
I hated my body for so many years. I could not accept that it would not behave itself. I would be getting ready for an event, and my stomach would swell to the point that I looked six months pregnant, ruining the outfit I wanted to wear. I would be out and about and panicking because I could not find a toilet. The accidents I have had are many, but I will not go into detail, as no one needs to hear that, do they? I would have a walk with a friend arranged, and I would wake up in excruciating pain in my hips, so I would have to cancel. I would be driving across the country to critical incident jobs and would not be able to get out of the car when I arrived because my body was completely stiff. Then I would hobble around all day on the job. I have to wear special insoles in my shoes to take the pressure off my joints because I have flat feet.
But the worst thing about having chronic illness? Having to explain yourself to everyone around you repeatedly. I am not talking about new people—they will, of course, ask why you are limping or why you need to be next to a toilet. I am talking about people who know you, family, friends, and co-workers. The number of times I have heard, “Oh, you have a bad belly, what do you think that is?” or “Why are you limping?” is countless. Not all disabilities are visible, so people could not see when I was in agony with my bowel and fatigued from fibro. But when they would comment on how I was presenting, it made me think I was overreacting. “Can’t you take a paracetamol?” Well, yes, I could, but that would not stop me going to the toilet 20 times a day, and it would not help with the fatigue. It would not stop my joints swelling or numb the pain in my hips. But thank you for your feedback.
Some people would get annoyed when I was unwell, especially if I was at an event and kept disappearing off to the toilet or needed to sit down. It was suggested that I was being difficult, “Why are you always ill?” Having chronic illness can be very isolating, and a lack of understanding from the people in your life is hard to manage. It left me feeling unseen. Many times, I received more kindness and understanding from strangers than from the people who knew me well.
I have never let my illnesses stop me from doing anything, and this has been both positive and negative in my life. On the plus side, I have been able to educate myself and gain experience from the different roles I have had in my working life. It has given me a determination to succeed despite how I may have been feeling and has given me empathy and understanding for my clients and the people I work with when they are struggling with their health. The downside is that I have not looked after myself enough, which has caused many of the hospital admissions I have had. I have worked myself to the point of exhaustion and have suffered from burnout. I would never say no to anyone and would help family and friends when in pain. I would not allow myself any self-care because of my stubbornness and the false narrative I had, which told me I did not deserve to rest. I was always such an advocate for self-care in others but was blind to the lack of care I was giving myself.
It was during my healing journey that I started to realise that my physical health was connected to my mental health. The trauma that had plagued me for so many years had some responsibility for my ill health. My poor body has been through the ringer. When I was a child going through the horrors of abuse, I would often get severe pain in my stomach and pass out. Whenever I was feeling depressed, anxious, or frightened as an adult, my IBS would kick off. My fibromyalgia would have me falling asleep at my desk, and my body would be throbbing in pain. I would often feel as though I were walking through quicksand, and my brain would be so foggy that I would forget simple words. When I was going to an event I did not want to attend, my stomach would swell, and I would be on and off the toilet.
I tried to make friends with my body, and I started to understand what it was trying to tell me, “Stop, for the love of God!” So, I started to say no. I said no to events I did not want to attend, and I said no to people who expected me to come running in like a white knight on a horse to help them. This was not easy after a lifetime of saying yes. I felt guilty a lot of the time, but I powered through. I started to rest when my body told me to, and I began to see a difference in my health.
What I also realised was that the burdens placed on me by other people were contributing to my poor health. When I gave these burdens back to them, the fibromyalgia I had suffered from for years suddenly disappeared. My body felt lighter, and my fatigue was gone. I needed no medication for it anymore, and again, this clarified how much my mental health was affecting my body. I had energy for the first time in my life. Although I am not skipping around the house like Mary Poppins all the time, my body can move without pain. I have not had a hospital admission in eight years, although I will be on medication for the rest of my life. I still get tired and limp around some days, but compared to what my life was like before, it is a huge difference.
I also changed my diet, cut out wheat, and reduced my alcohol intake. This was hard, mainly because I was frustrated that I had to. I wanted to eat a bacon sandwich on soft white bread or have a pint, and I did, often. But it made me so unwell afterward that it was not worth it. Please do not think I am preaching about your body being a temple. I am not. It annoys me all the time that I cannot eat and drink what I want. It sucks. Gluten-free is just not the same! But I feel so much better for it, and I must try to keep my inflammation markers down in my body.
If anyone reading this suffers with their health, I see you, and I understand how lonely it can be. But how much do you think your suffering is made worse by your own decisions? A lot of my illness was made worse because I would not help myself. But I also know how hard it is to put yourself first when you have been conditioned to put yourself last.
So, ask yourself, "Do you say yes all the time? Is this because you think you must? Do you allow yourself to rest? If not, why not? Have you been conditioned to believe that you should not? Do you put everyone else’s needs before your own?"
What I have learned over the past two decades is that your body is a lighthouse, and it will tell you everything you need to know. Listen to it because it is trying to help you, not harm you.
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Read more from Jenny Hersey
Jenny Hersey, Life Coach and Counsellor
Jenny Hersey runs her own business, working with people to create a life that brings them purpose and joy. A victim of childhood abuse, she has since dedicated her life to helping others. She works internationally and has clients in different parts of the world as well as in the UK, where she is based. Jenny's mission is to educate people about the ability to heal themselves. She believes that everybody should have access to counselling and life coaching, no matter what their circumstances are.
