Trying to live with Chronic Illness

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Hey everybody!

So a couple of posts ago HERE, I talked about how I felt the NHS had let me down because since my diagnosis was changed from Multiple Sclerosis to Fibromyalgia and Chronic Fatigue Syndrome. I have had hardly any medical intervention since then and have felt like nobody cared, this started me feeling depressed and lost and honestly I had stopped going to see my GP because I never got answers I wanted and I just put up with worsening symptoms.

So after thinking about it for a little bit, I sent an email to my doctor’s surgery with an explanation and a link to that post. I wanted to see if it would make a difference and I wanted to make sure that this kind of thing did not happen to anyone else. I suspected that I simply fell through the cracks of an already overstretched and underfunded NHS, but I am still a human and it was about time I needed to be my own advocate.

I heard back early the next day from the surgery manager who said they were very sorry about how I felt and the doctor wanted to see me. I got a phone call later that day and I have an appointment to discuss my concerns and hopefully get some of my symptoms treated and referred to the right people.

This really did reinforce for me that I am my own advocate, and though I know the NHS is given a raw deal by the government, and though I used to be on the other side, I deserve to be treated better. I read a lot of blogs run by other chronic illness warriors and I follow them on You Tube and I see the sort of treatments that they recieve and I have been given none of those options. So this week I am going to be researching and printing things off and taking it all to the doctors because I need more than I am getting.

So this was a big lesson to myself, but also I hope that it inspires all of you that if you are not feeling supported or well treated by your medical team speak up! I am going to be taking my husband with me to back me up and I am going to make sure together we are heard…nobody can speak up for you unless you try to speak up for yourself.

So if there is any research or treatments you think I need to look into leave me links in the comments and I will get researching!

Namaste xxx

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One Response to Be your own advocate

  • “nobody can speak up for you unless you try to speak up for yourself.” This is so true and so obvious. Only yesterday I was saying this to my daughter and that no-one else knows what is going on in our heads and in our bodies unless we voice it and ask for help. Knowing the right person to talk to about it is also an art. You have done well and your story is inspiring to me. I constantly feel like I have to be my own advocate.
    I can also relate to this as when I was first trying to find out what was wrong with me all the different doctors I went to were concerned with was is this Multiple sclerosis. i had so many different MRI’s and then when it was not MS they would pass me to another specialist.
    Even now we finally have a diagnosis (I have Fibro & other autoimmune diseases but not MS) we have to keep on fighting for ourselves!

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Hello
Hi there I am Beverley, I am a Buddhist Christian trying to find a way to live with Fibromyalgia, Anaemia, Chronic Fatigue, Depression and General Anxiety Disorder. I live with my Husband Lee and our dog Gizmo and our budgies Rey and Finn. I live in England and look forward to getting to know you better. I will be updating every Sunday.
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