Things have been hectic here both in my personal life and health wise this week so I haven't been able to put together a blog post this week. So I have decided to re-post this one from a year ago.
Good news though - for those of you who don't follow my page on facebook, my MRI scan came back clear.***Sarcasm alert***
Nothing is guaranteed to get me raging more than unsolicited medical advice. I can be calm and happy one moment yet once I am on the receiving end of someones latest theory on what will get me well, I can be incandescent with rage in around 60 seconds. It's not the sentiment of the bearer that I question, it's the very little knowledge of my condition that they possess that irritates me.
Unsolicited medical advice is just that unsolicited. Unless I have asked a direct question regarding your opinion on or suggestions on what would make me feel better or would cure my condition then just don't. I know myself in the past I have offered up to others what I have considered to be pearls of wisdom without them asking for it. However now having had some time being on the receiving end of countless suggestions all of which were unsolicited I can tell you it's infuriating. Now I refrain from doing it because I know that it is not at all helpful. Sending me links to new medical papers on research into my condition is not the same as unsolicited medical advice. That is very helpful and greatly appreciated.
Over the last 7 1/2 years I have all sorts of helpful suggestions, from being told that I was being punished for a sin in my past life and needed to pray harder to gain recovery or to being told to eliminate stress from my life. Eliminating stress from any ones life is good thing however it's not really been shown to be a cure for any illness that I am aware of. I have been informed that removing the artificial sweetener aspartame from my diet would be the magic bullet, I had several emails about that one when it was doing the rounds. I have been told that I just needed to get outside and exercise. That one hurt me quite considerably as out of all the things I can no longer do walking my dogs is the one I miss most. Anyone who suggested that one clearly doesn't understand my illness or the sense of loss I feel about being no longer able to do so many things.
We all in our lives have provided unsolicited medical advice to someone be it a partner, a family member or a friend and when we have given them this advice we have done it from a place of love. We give them this advice because we truly want to help them feel better and get rid of whatever illness is ailing them. It is not done to hurt them or to make them feel bad about themselves. I try to remember the sentiment behind the persons advice when it is issued. Sometimes it is really hard though because issuing advice for a cold is a world away from issuing advice about a long-term medical condition.
People with long-term medical conditions usually have more knowledge about their conditions than a lot of the medical personnel that they will come into contact with. Those with long-term medical conditions know how to manage their condition what medications work and what doesn't. So what irks me is when someone who has zero knowledge of your medical condition decides that because they have read, seen or heard a nugget of information that they are able to tell you what to do to get better. A situation that has long eluded the medical profession.
A piece of advice that tipped me over the edge recently was received from someone who should have known better. A few weeks ago my phone beeped to let me know I was in receipt of a text message. I had a look at the message and just growled. It was from a friend who works within the medical profession who had sent me a link to a page on BBC News website. Without even checking the link I text back "Please tell me this isn't about the girl who went Vegan and magically cured her PoTS?" I knew it was without even looking, as this "story" had been doing the rounds on various forums, where there were several Vegans and no, they hadn't been cured despite their dietary choices. What we had learnt on the forums was that said person who cured her medical condition, fell into the age group where you can grow out of PoTS and she also had a cookbook being published so hence the flurry of unhelpful newspaper articles about turning Vegan as the cure for PoTS. My text message received a rather sniffy response, the tone of which made me feel like because I hadn't decided to become a Vegan immediately then I really must not want to get well.
There were a lot of things about this text conversation that annoyed me. Some weeks previously I had informed this person I had been diagnosed with spinal arthritis and received no response. As this person was now moving into the outer orbit of our both mine and hubby lives I didn't take offence. Sometimes friendships change and that's the way of life. Secondly this person works within the medical profession in a highly paid and highly responsible job. Thirdly this person has known me for nearly 20 years and in all that time I have been vegetarian, they know this. I know vegetarian is not vegan - I have been vegan in the past for about 6-10 months. Finally, this person is supposed to be a person of science, as good as a balanced vegan diet is for you where is the medical evidence to back this woman's claims up? I didn't argue I just ended the conversation pointing out that I didn't just have PoTS anymore that I had in fact been diagnosed with severe autonomic nervous system dysfunction and did they have any dietary suggestions for that one? Funnily enough I haven't heard from them since.
I don't know what made me angrier the suggestion that becoming a vegan would cure me or that when I rejected the advice I was made to feel like I wasn't doing everything in my power to get well. It's not the first time that I have been "accused" of not wanting to get better, when I have rejected someones advice. That's why when I receive messages / emails or have conversations with people when they offer advice I try to smile and say thank you rather than get angry about it. However due to this person's medical background I felt extraordinarily let down by the fact they had even sent me the link without first checking out its scientific validity.
Again I don't doubt this persons sentiment was anything other than provide me with some advice that he or she felt would help set me on the road to recovery. It is just on that Sunday morning I wasn't able to see that and responded as I would have done 7 1/2 years ago. I learnt through trial and error when people were offering me advice it was better to smile and nod rather than to dismiss their advice out of hand as hard as that maybe.
So having sometime this week to think about all the unsolicited medical advice I have received over the years I thought I would share some with you;
1. Pray harder / more / start praying - this one is always a little difficult for me as I hold no religious beliefs. It is also quite insulting when you think about children who have life limiting illnesses would you honestly impart this advice to the parents or imply that their lack of praying is the reason why their child is sick? It just seems a little insensitive and a person's religious beliefs are private between them and their God.
2. Eliminate stress / take up meditation - Everyone wishes that they could eliminate stress from their lives, no one has ever said "please give me more stress". So when this little pearl of wisdom is thrown my way I do have a little chuckle to myself. Stress is all around us its part of the modern condition. There are things that you can do to reduce your stress. I like my morning Pilate's session that is done in complete silence as I can not think about anything but the exercises I am performing. It does quieten down my mind I can't argue with that however it is yet to cure my medical conditions.
3. You need to get out more - I can't argue getting out of the house lifts my spirits and makes me feel part of the human race. However getting out of the house will also land me in bed for several days just due to the over stimulation of my senses and the physical energy required to keep myself propped up in my wheelchair. When I can, I take a short drive with my husband for a change of scenery and some fresh air whilst he walks the dogs. What people don't realise is to achieve those 30 minutes out of the house I have to rest all afternoon. I wonder what illness getting out more is known to cure?
4. Get some exercise, you feel ill because you've let yourself get so deconditioned - ha ha ha ha ha! OK I will admit taking up Pilate's has helped me loads in the last 6 weeks. However the type of exercise that the people who suggest this to me mean is going out for a brisk walk along the seafront etc they do not mean lying on the floor for 20 minutes performing Pilate's.
5. If you lost weight you would feel better about yourself - I have no argument with this one. Being a healthy BMI is better for you ( and yes I am fully aware of the arguments surrounding the fact that the BMI measurement needs updating as it's not completely accurate), its kinder to your joints and if you are overweight losing weight can make you feel fab. However when it is said to someone who has gained weight as a side effect of medication that they can't stop taking it's not at all helpful. I wonder if you had a friend who was overweight but healthy you would have the cojones to suggest that? Feeling better about myself suggests that the person believes that my condition is psychological and not physiological which is not the case.
6. Change your diet eat Paleo, Fodmap, vegan, gluten free, raw food, clean food etc etc etc - I can't argue with the fact that many people with EDS and PoTS have had great results in reducing their gastrointestinal symptoms when they have changed their diet. People with autoimmune diseases such as Myasthenia Gravis are encouraged to go gluten-free to help manage their condition. Diet does play a much bigger role in the body than current medical thinking appreciates. I believe as long as you are eating a balanced diet as free from convenience foods as you can you are doing a great job. I have tried going gluten-free it made absolutely no difference. As I can't digest raw vegetables or fruit with horrific stomach pain I will not be trying the raw food diet again. I have been thinking about going vegan for a while now for ethical reasons not health reasons but I am currently too sick to do anything about it. I do say do whatever you can manage diet wise but do not become a diet zealot / bore! However don't suggest things to me that I have already tried!
7. You need to adopt a more positive mental attitude - My only answer to that one begins with F and ends with F. Moving on!
8. You need to take up a hobby - Oh OK so because you don't understand the world of blogging you are automatically assuming that it's not worthwhile? See above for remainder of response.
9.Have you tried X,Y,Z herbal supplement - I am not against herbal medicine that has a proven track record (or large amounts of anecdotal evidence ) such as evening primrose oil for PMS or Black Cohosh for the menopause. I use peppermint tea whenever my stomach is playing up (pain or wind) as I know it works for me and many people on the forums I am part of use liquorice to boost their blood pressure. What I am referring too are the people who know zero about your condition but insist that a friend of a friends uncles, aunties , sister cured themselves of a, b, c, by taking this supplement. Why they think you have the same as their friend of a friends uncles, aunties sister is beyond me as if you ask them to name your own medical condition they wouldn't have a clue.
10. You are paying for the sins of a past life and need to be forgiven- I saved this one until last as it is a personal favourite of mine. If indeed I am paying for the sins of a past life what am I supposed to do about it? It also brings the question to mind what makes the bearer of this news so special that they aren't being punished? I could go into a whole anti religious rant but I am respectful of other people's beliefs I just wish they could be respectful of mine.
I have probably had quite a few more than I can currently remember that they are the ones that stick in my mind. I am sure over the years to come I shall be in receipt of many more!