I am a mum, wife, teacher and a fibromite. I live with a condition called fibromyalgia. Fibromyalgia is a condition characterized by over 60 symptoms of which the most distinguishing is chronic pain and fatigue, depression, anxiety, ezcema, irritable bowel syndrome, SAD ( Seasonal Affective Disorder), restless leg syndrome, chemical sensitivity, loss if libido, mood swings, sciatica, non refreshing sleep, night sweats, brain fog, tender points, painful joints, lack of concentration, social anxiety, temperature irregulation… The list goes on.
Many doctors do not understand fibromyalgia. There is no definitive test to diagnose the disease. The worst part of fibromyalgia… It destroys your dreams and puts enormous pressure on your family and friends.
Let me explain… In the early stages, before diagnosis, you experience several of these debilitating symptoms. But it is intermittent. You go to the doctor who asks questions to establish your medical history. BUT you have brain fog… so you struggle to recall important relevant details. Due to resource constraints, the doctor does some tests like blood pressure, urine etc and every test comes up normal. He or she prescribes some medication that probably addresses one symptom only, and says that you will be feeling good in no time. You go home and feel awful and GUILTY that you wasted the doctor’s time or ANGRY that the doctor does not understand.
In the days to come you feel rotten, exhausted, in excruciating pain. The several symptoms come and go. But you are tired all the time. You go to the doctor again. And again. And again. Eventually the doctor refers you to various consultants and every test comes up normal. You take time off from work. Your line manager is getting impatient and annoyed that you are taking so much time off. Your line manager refers you to Occupational health. You worry about losing your job.
You cancel plans with friends or family on the day and feel GUILTY. You stop making plans because you are too scared that you will cancel on the day and disappoint your friends or family. You can’t do things with your children, like kicking a ball in the park, you struggle to explain your condition, you think you are going mad, you worry that social services will take your children, you worry that you will lose the house, you are disgusted at the state of your house, you are tired and in pain, you avoid asking friends around because the house is a mess but you are too tired and in too much pain to clean, you struggle to meet your friends for a coffee because you are too tired and in too much pain to leave the house. You lose friends.
Your family and friends offer advice.
” Have you tried a long hot bath?”
” You need to exercise more”
” Your body is just run down”
” Oh, you are such a hypochondriac, ha ha”
” Have you tried yoga?”
” But you don’t look sick”
” Just lose some weight” (The scientific word is mass, people! One of my pet hates.)
“You must ..”
” Have you tried…?”
This goes on for years. Eventually you get a diagnosis but you find out that it’s is a chronic disease, covered by the Equality Act. But that information does not console you. You have to live with the pain, fatigue and other symptoms for the rest of your life. Your income potential is minimal, You may never afford your own house. You may never travel to the counties you dream about. You may never have the big family you hoped and prayed for. You may never reach your career goals (mine is to become a headteacher). You may never be treated equally, without discrimination especially when you declare your disease on a job application.
You may never fulfill your potential.
If you meet someone with chronic symptoms, consider if they might have undiagnosed fibromyalgia.