1. Do you have a primary diagnosis, if so, what is it?
A: Yes, I have been diagnosed with Myalgic Encephalomyelitis, I was diagnosed with Fibromyalgia too.
2. How long did it take you to get diagnosed?
A: This is an important question because I had been searching for answers since around 2014. I kept on getting multiple infections especially when I exerted myself like going to see friends or drinking and going to bars or going for long walks. My throat was constantly inflamed and swollen. Flu. Flu. Flu and more Flu. It was a constant waxing and waning feeling of flu and feeling poisoned. I went to several specialists, ENT specialists, no one knew what was going on and I was dismissed by local GPs and because of my mental health past they tried to tell me I was just stressed. Yes, stressed because I was ill and no one was helping me!!
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: I was relieved that I wasn't going crazy. It felt comforting to have a diagnosis as I said to myself that I will follow the consultants advice and hope to get better in 6 months as he claimed.
I was told by the consultant to increase exercise. I had no idea about MECFS really so I took his advice. I googled and treatments were therapy and exercise. At the time I was thinking how is therapy going to help me feel better physically. Ive already had therapy for years and this was not mental illness! So I went on a mission to exercise daily. I tried to walk a mile a day. At this point I was mild. I continued to decline and a year later needed a walking aid. I went back to that specialist and he said to me that I need to keep on exercising and find a job where I would be on my feet all day. At this time I had already been researching MECFS on facebook and social media and was learning that continued pushing and exercise can lead patients to be bedridden and in wheelchairs with no turning back. I became housebound in December 2017. Its been a year being housebound and on some days bedridden. I have daily dizziness, nausea, flu like feeling, my eyes are not producing enough moisture now too, so headaches. Shakiness, weakness, confusion, just sheer poisoned feeling and burning pain, some days the pain is so bad all I can do is just cry and wait for it to pass. Needless to say I never saw that specailist again and I am now luckily working with the good guys who I luckily came across from other patients.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: TRUST YOUR GUT. Do not let a doctor try to tell you that it is in your head or you are just stressed. They may mean well but that is very damaging. Seek chronic illness support groups online. Speak to patients who are diagnosed. Look for online groups and talk talk talk. Let patients help you, research good doctors in your area. Read about what illness you think you may have and fight to get a diagnosis. Do not give up. This is your life. Fight for it.
5. Has your chronic illness changed your perspective, and if so, how?
A: Absolutely. If I am honest, I never valued life before. Small things like nature, the sun, the moon, all things I never really valued. People go around daily walking and walk past beautiful things and they never even see these things. If I can manage to have a car ride with my Mum or my mobility scooter I just feel grateful. I appreciate the world and what it has to offer. I appreciate life. Ive also changed my perspective on myself. I was always caught up on what other people looked like or perfectionism. Now, I physically cannot "compete" with these people and why should I? Everyone is perfect and beautiful as they are right now in this moment.. So yes, I am pretty much a guru now! Ha ha.
6. What moment are you most proud of in your chronic illness journey thus far?
A: I cannot pin point any single thing I am most proud of. I am just proud of myself in general of staying strong and hanging in there and always holding onto hope and better days.
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: October 2017. I remember it well. I was getting worse and I was struggling to deal with this mentally. In the past I could always go for walks, sing, see friends if I was suffering with my depression but now this isnt an option. I could not handle it and I relapsed in self harm and was suicidal. I went to see my old psychiatrist and started visiting a psychologist once a month if I was able. I went for about 4 months not seeing her in 2018 as I was just too ill but she was there for me on the phone and helped me get through that. Physically the low point is now, what I am experiencing now... but it has to get better.
8. What or who has helped you the most during the lowest days?
A: My fantastic Mum. She is not well herself but she has cooked meals, helped wash my hair. My friends who may not be near but offer me the emotional support. Some of my closest friends are in the USA and ive not seen them for ages but they are family, I am blessed to have people in my life.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: DO NOT push yourself. Give yourself some slack, you are dealing with a severe condition and you need to give yourself a break. Things can get better. Hold on. Reach out to people, try not to isolate. You got this.
10. What would you like the world to know about life as a chronic illness patient?
A: That just because we may look well it does not mean we are well. A broken leg you can see, so that is easy. But having empathy for someone with an invisible illness is harder. The public judge and assume that if people NEED to be in bed resting they are lazy or they have given up or are negative. That is so wrong. We NEED to rest. We would love to be out in the world doing things but we cannot and we are in a huge amount of pain so please try to understand. We are also still that person you knew before we got sick. We still love you and want you in our lives, just bare with us while we battle this, please. Thank you.
Emma | @thechronicsurvivor