My name is Tammy. I’m 32 and I live in the UK. I’m sharing my story about my rare disease, eosinophilic gastroenteritis, to help raise awareness and to reach others out there with this condition.
I’ve experienced abdomen pain for a long time, even as a child. Doctors would say ‘it’s a bug’. This went on for many years until I reached my 20’s. I was very slim, I couldn’t put on weight and was going in and out of hospital constantly. This went on until around 2010. After long stays in hospital, tests, procedures and scans, I was given different pain killers to try to ease symptoms, but nothing seemed to make a difference. I missed out on going out and having holidays abroad because I spent months in and out hospital beds. I was a medical mystery until finally they found out I had a rare condition!
A medical professional who understands more about this sort of disorder took interest, and from then I was under his care, along with other consultants. I was diagnosed with a rare disease called eosinophilic gastroenteritis. I can’t thank the medical professional that looks after me enough.
But my story doesn’t end there. Eight years down the line I’m still unwell, but now have medication to ease the symptoms and try to manage the pain. I’m on a cocktail of medications which includes a chemotherapy medication. Not only do I have to get along the best I can, managing the pain and other symptoms that occur, but also the side effects of the different medications. My life is filled with hospital and mental health appointments. I’ve been let go from jobs because I’m constantly in and out of hospital or I just can’t do what the job entails due to being unwell.
The symptoms that come along with the illness eosinophilic gastroenteritis are swelling of the abdomen, very severe pain, sickness, weight loss and weight gain (due to steroids and anti-depressants), loose stools, and allergies to food and things around me. The pain comes on at any time. In the past, I’ve passed out with pain in the street, but luckily I’ve had a family member with me.
I not only suffer physically with pain in my abdomen nearly every day and many other symptoms, but because of all the stress, frustration and trauma from being in hospital and being unable to live life like everyone else, I have depression, anxiety, panic attacks, low mood and psychosis which stems from the medication being increased and decreased for when I’m in flare ups.
I now have problems with my bladder and I am waiting for a procedure and I also have ulcers and polyps that have to be removed from time to time. Even though I feel low, I still try to smile through my pain. I try to remain as positive as possible. I want to raise awareness, not just for myself, but also to help others who may have a rare disease or invisible illness which may be physically, mentally, or both. Please don’t give up. Talk to a professional. You are not alone. I know how it feels to be in chronic pain. It’s been hard to accept that I have a rare disease that may not ever have a cure. That I have a rare disease that prevents me from working and doing the job I loved. If I can’t physically do my job, I can at least try to help this way by speaking out. People seem to judge others because they don’t look sick but not all illnesses are always visible to the human eye. They do hide, you can’t always see them. Remember, you are not alone.