Nov 20, 2021
Your Test Results Came Back Clear
Why this is harder to hear than you’d think
‘Great news everything came back to normal.’
This is usually the report you hope to hear from your doctor about your blood test results. I certainly never expected to be sat in the GP surgery with my fingers crossed that they would actually find something. Yet, there I was.
Why the heck would you want that?
Okay, let’s rewind back to around 4 months before my first lot of test results. It was a week before I got married, and I started to feel unwell. I could barely eat anything, I just felt constantly sick. I felt lethargic, and my lymph nodes were inflamed. Of course, we put it down to nerves and excitement.
But a week later it just got worse. I was feeling exhausted all of the time. I couldn’t regulate my own body temperature, I was shivering one minute and the next my bed sheets were drenched in sweat. I felt like I had the flu. Actually, that’s what I thought it was.
This went on for weeks. I was trying to pack away food when I could, which was pretty tough when I felt increasingly nauseated. But I was so scared I would lose weight. I feared if I lost weight it would undo everything I had fought so hard to achieve in my eating disorder recovery. My muscles were constantly aching, and it was becoming more and more difficult each day to just drag myself to work.
Eventually it was brought to my attention that my ‘flu’ had been going on for nearly 4 months! I was way overdue a GP visit.
Getting answers?
My first visit was pretty much as you would expect. I told them my symptoms and they checked my pulse and lymph nodes. It was suggested that I was stressed and I was advised to just relax.
During my second trip to the GP surgery the doctor had a prescription waiting for me for antidepressants upon my arrival. He didn’t ask any questions and stopped me when I tried to tell him how I was feeling. He told me I either took the prescription or I didn’t, but either way he knew it was depression, without letting me say a single word about what was going on. Just like that. He must have been magic.
I had to put in two complaints before I was finally seen and blood tests were done. But they just kept coming back clear. And the more I went back to ask for help to manage my flu like symptoms, the more I had this thrown in my face. ‘Everything is clear. There’s nothing wrong with you.’
Finding hope
It was during one of these visits when I finally had the good fortune of meeting a locum who had just started. As soon as I entered the room ready to again beg for help to manage what was happening to me, she greeted me warmly and told me she had read all of my notes. She listened to me and then asked me whether I had come across the term me/cfs before.
She shared with me that she had suffered from chronic fatigue herself and it wasn’t until this time that she realised that chronic fatigue was different to being just tired. She told me that she thought it was all in a person’s head until she experienced it herself.
I cried as she filled out the referral form to discuss a formal diagnosis. She was the first person to really listen to me. She treated me like a human being, and not some waste of time who was fabricating illnesses, which is how the previous doctors had made me feel.
And I did receive the diagnosis of me/cfs. From a Rheumatologist who spent less than 10 minutes with me. Yes, I had an answer, sort of. But that was it. The outcome of this appointment consisted of him telling me to just push through my symptoms and exercise until I feel better. Which is the worst thing to do if you have me/cfs, please don’t do that. I was told to just Google how to manage with me/cfs, and was promptly discharged with no follow up or support plan.
I had a label, now what?
I thought having a name for what was wrong with me would help, but it didn’t. You see, my quest was not to have a name for why I felt the way I did, but to find out what it was so I could receive support to fight it. All along all I asked for was help to manage feeling so crap. What I received was a label that most professionals, and people for that matter, don’t take seriously because there are no positive test results and you can’t see it.
I have had to fight for years to be able to find support to manage an illness that is on my medical records, but is still largely dismissed when I ask for help. After 3 years of begging for any sort of support, I am finally receiving treatment from a specialist service that I was told didn’t exist in my local area.
It has helped me to learn about pacing myself and howto listen to my body’s needs. The only downside? They are talking about starting GET (Graded Exercise Therapy) with me. A treatment that has been widely spoken about as being not only unsuccessful for a lot of me/cfs patients, but has been found to actually make symptoms so much worse. In fact, the NICE guidelines have recently been amended to reflect this and no longer recommends this type of treatment for me/cfs.
You see, me/cfs is still not treated as seriously as it should be. Meaning that research to learn more about causes and treatments is dramatically underfunded, leading to many patients being given treatments that not only have no backing that they actually work, but have often led to people’s conditions becoming even worse due to the treatments they have received.
Having a hidden illness comes with extra trials we don’t need
People with me/CFS and other hidden illnesses and disabilities not only have to fight for support, heck, even just to be listened to, they also have to endure the looks on doctor’s faces while they tell us that nothing came up in our test results so we must be fine. You know, that patronising look somebody gives you when they are trying to be polite but they just don’t believe you. We have to beg and beg to be able to get answers or even some help. Just anything. We have to go through all of this while suffering from pain, fatigue, and all the other rubbish things we are already dealing with.
While we don’t need tests to come up with weird readings to know how we feel, and to know that something is not right with our bodies, having somebody gleefully tell us that the tests all came back fine is a terrible thing to hear. Because it often means that while we are certainly not fine, people are likely to not take us and our illnesses seriously.
We need to start to expand our understanding of illnesses, and realise that our bodies are so complex. There is still so much we don’t know about how they work, and therefore how illnesses can impact on their many different complicated systems.
My blood tests results all came back fine. But I am far from fine. I have had to readjust my life, mourn for the loss of the capabilities I once had that have now left me, and deal with pain and chronic fatigue every time I try to do even half of what I used to be able to do.
Just because there currently isn’t a test for what you have, just because people can’t see it, it is real. And I am so sorry you have to go through what you do everyday. You are not alone.
