Jessica Kellgren-Hayes

Q At its worst, what were some of the worst symptoms you were faced with?

A At its worst, I was on my back and I couldn’t open my eyes because all light hurt and noise hurt. Any kind of sensation, like someone sitting on and jolting the bed hurt. Thinking was hard, everything was hard because of the brain fog. The difficulty in even explaining your symptoms definitely made it hard in diagnosing because communicating is harder.

Q Did you find that everyone believed you, including doctors?

A I didn’t have a problem because ME was already recognisable as a symptom. Where I lived there was a dedicated ME department, so I never had problems with diagnosis like most people do have.

I’ve heard from a lot of people that they’ve had terrible trouble getting it recognised, getting their school to recognise it, or even getting their GP to take them seriously. Fortunately, I didn’t have that, and I have a really great GP.

Q In your opinion, what are some of the biggest challenges sufferers of ME are faced with?

A Life! If you think about it, how hard everything is, anything you manage is an achievement. I’m so proud to have achieved university, and I’m very well supported here. I have someone come in for 3 hours in the morning everyday, just to help out with things like doing the washing up, the laundry and tidying up because I just couldn’t put my energy and focus into doing work if I was also concentrating on other things like that.

Support has been one of the biggest helps. The worst thing with ME is always having to deny yourself things and having to hold yourself back, and then also being judged for that. It’s terrible because for example you can’t make it to your friend’s party as you’re too ill, you’re too tired. If you did go, it would set you back and you’d be in bed for a whole week. Trying to explain that is difficult to people who think you’re not interested.

As an over-achiever or workaholic, it’s hard to not to join different societies for example and it’s hard for people who didn’t know me before my illness, that there is a difference in my original personality and illness. Even with family, I do want to help out but I don’t have the energy and people can judge quite harshly when you have to pick things to use your energy on. It must be so much worse for other people with children or other commitments; if they chose to spend their energy on doing something nice for themselves, people would think; why haven’t you chosen to use that energy on spending time with the children or doing things for them.

Q What do you do now to manage the symptoms? Any particular treatments?

A No, I haven’t actually tried any of the treatments, but one of the things I’ve found that works was purely incidental. Due to my HNPP, I have stomach troubles and have to have a specialised diet. The one I used it called The Ketogenic Diet where I can’t eat lots of carbohydrates. Through this diet, I’ve found my energy levels have shot up amazingly, and I keep recommending it to people even thought it’s not what it’s used for, but it really does work.

Q Are there any treatments that you’ve tried and wouldn’t recommend to others out there to try?

A I’m not a fan of people telling me what is right for my body. I think we all instinctively know our own bodies. Even a doctor who’s been studying ME for 40 years might say “that’s twice as long as you’ve been alive”, but he hasn’t lived with it day and night. So technically, I’ve studied it for 20 years day and night. It’s impossible to know what it’s like until you’ve had first hand experience.

Q What would you say to those readers who’ve read that ME is an illness that is psychologically based?

A I’m very anti all attempts to put ME down as a psychological disorder. It’s dismissive to tell someone they’re only struggling with something in their head. A lot of mental problems are created by a chemical imbalance, but never say that ME is. Only that you think you’re ill, but not really. There are other avenues to explore as to how it happens, but I wouldn’t agree with this attitude. A lot of people think you can cure ME by thinking happy thoughts and assume we never think them!

I think it’s really important to stress that although ME and depression can be found together, the depression is caused by the ME, not the ME caused by the depression.

Q Have you had any experience with government benefits? If so, what hurdles did you come up against?

A Yes I have, but I haven’t any troubles claiming because I have another genetic problem which they can find through blood test. I know a lot of people do have troubles with that.

Q If you were speaking directly to someone who just found out they are diagnosed with the illness, what would you say to them to give them hope for the future?

A First things first, take it on day at a time. Your life is not going to be the same but that doesn’t mean it will be awful. You can find so much enjoyment in smaller things. Don’t worry about the big things to start with. Let everything settle down and try and be relaxed about it. Don’t push yourself too hard and look after yourself.

Thank you to Jessica for taking the time to talk to us and we wish her all the best in her studies at University!

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