SARCOIDOSIS STORY

Read below the story of Craig and learn more about his journey with sarcoidosis.

Name: Craig Tooley
Age: 43
Where are you from: Kingston upon Hull
Diagnosis: Chronic sarcoidosis
Hobbies: Photography although I don’t get out very often anymore.
Life long dream: To be happy.
Describe yourself in 3 words: Sad, scared and angry.
Life Motto: Has changed now and is now to survive.

Personal statement: To make sarcoidosis more aware to people either through fundraising or greater awareness and to show not all illnesses are visible.

What is your condition and when were you diagnosed?

I was diagnosed in July 2016 with sarcoidosis after numerous tests. Unfortunately after trying various forms of treatments only prednisolone seems to slow the forming of granulomas and from there my lung function, sat oxygen levels and ability to perform given tasks has got worse and worse. My daily life was getting harder and harder were I was living to survive and any pleasure I got before was becoming a chore. By this point I had no social life, no friends had stuck around and my family couldn’t even tell me the name of the illness let alone offer any help. In all their eyes I didn’t look ill so it couldn’t be that bad. Over the years we’ve just got on with it as a family, the hotter months better than the winter ones. It wasn’t until I tried flying after COVID that I realised how bad my chest had got as I usually breathe comfortably on the plane. Upon our return I went to see my specialist Dr Simon Hart who is one of the most knowledgeable people in the field and he sent me for some more tests. I then heard the most scariest words I’ve ever had to hear, I think it’s time to get you on the transplant list. I can’t to this day explain how I felt after I got out the hospital I just froze I was alone, scared and didn’t know what to do. Anyway I’m still fighting still here (just).

How long did it take to get diagnosed?

I was diagnosed pretty quickly. I think I had blood tests, MRI, CT and then a biopsy to confirm.

What have been some of the biggest challenges you have faced since your diagnosis?

Getting help and support because I don’t look ill, the only time I get offered any help is after a trip to the hospital which is usually out of guilt.

What impact, if any, did your struggles with sarcoidosis have on those closest to you?

My diagnosis has had a massive impact on my wife, who even to this day is learning how to cope as I don’t think I’m ever the same two days running. She is having to deal with normal everyday life and then me, I couldn’t wish for anymore. Although it’s been very challenging at times, I wouldn’t have chosen anybody else. Also, with 2 young children who do not understand that I’m really poorly and want to do normal everyday things and sometimes that alone takes every bit of energy I have, I just hope one day they appreciate how hard I tried.

How do you feel your condition has impacted your mental health?

My mental health has been torn to shreds, I struggled initially to get any help or where to look for it. Now I see all kinds of people but I don’t think I’ll ever get it into my own mind that there is never going to be a happy ending which is the hardest part.

If you could go back to the beginning of your diagnosis, what would you tell yourself?

Try and surround myself with people who would help more when I needed it.

How did you hear about SarcoidosisUK? How has it helped you?

Through the internet and yes I have used the nurse service numerous times which is very good.

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