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Guest Post – Living with a Chronic Illness while Battling Stigma

Self medicating the unknown illnesses

 

My name is Jo, and I live in a small village in Cornwall, UK. Around 20 years ago I lost my Auntie who I was very close to, to alcoholism. At this point in my life, my world turned upside down, and I first experienced depression.

My way of coping was self-medicating with alcohol. I would frequent the local pubs and bars in the evenings with my partner who would also drink.

A few years later I lost my grandmother (my dads mum), and then just six months later my dad passed away at 60 years of age.

I carried on drinking after this to cope with the depression, but after a couple of years, I sought help. My doctor pointed me towards counselling. This was when I realised how ill I was.

While using alcohol as a coping mechanism for many years, it had numbed the symptoms of illnesses I didn’t realise I had. I was subsequently diagnosed with depression, anxiety, and fibromyalgia.

Even though I started to change my life around by not going to pubs and control my drinking, my illnesses have gotten worse.

 

Chronic illnesses and losing friends

 

I am now a 40-year-old woman who sometimes feels like an 80-year-old. I am in pain every day, sometimes crippling, and have constant relapses. I feel disconnected from the world because I have no social life. People who I thought were friends didn’t understand how debilitating my illnesses can become. So they either left me alone, or I left them because they couldn’t or wouldn’t understand. I feel furious at times that although I don’t drink or smoke, I’m still so ill all of the time.

Although I would still like to socialise as I used to for example; go out to the cinema, go for a meal or any other social activity, it causes so much anxiety and pain that I’m better off staying at home.

I feel uncomfortable because people have judged me. If I go to local events, people are noticeably awkward with me. If it wasn’t for my partner, I couldn’t manage going shopping or even walking our dogs.

I still feel that when people do see me out, they don’t understand what’s going on underneath it all. They say things like “it must be the weather making you feel down”, or “you should try and take your mind off things” and the really unhelpful “there are always people worse off than yourself.” It feels so patronising.

I can’t manage to lift or carry any more than the lightest of shopping bags. I can’t put the bins out, do household chores or even plant flowers which I love to do, because it all causes such agony.

 

My own neighborhood really is against me

 

As previously mentioned I don’t walk around the small village where I live, of which I have lived in for almost 25 years, on my own. This is due to the stigma and being made to feel hopeless and “not normal.” Plus, I’m terrified someone might ask me how I am and yet I know they don’t want the truth!

 

And if all that wasn’t bad enough…….

 

However, if the stigma and dissociation by friends and acquaintances weren’t bad enough, there is another problem that is a barricade to genuinely ill people. That is the dreaded Department of Work and Pensions (DWP).

The DWP make you wait on average 30 minutes to answer your phone call, have no idea of the difficulties or hardships people go through on a day to day basis, expect you to travel for hours in chronic pain for interviews.
They are mostly terribly rude and lack empathy. At your lowest point, they can drive you to deep despair. Out of approximately ten DWP employees I have spoken to, only one seemed to genuinely care and want to help.
The DWP treat everyone as they are somehow trying to cheat the system, and yet only a tiny minority do.

By the time I went in for a DWP interview I was in agony due to the travelling, and in tears and shaking due to severe anxiety. Within 20 minutes of arriving at the centre, the interview was over as the assessor (who was very nice) acknowledged how ill I was. The travelling time was more than 3 hours. This is becoming a significant issue with the government today not taking into consideration the genuinely sick who need home visits.

 

How do I cope with everything?

 

With so much pain and darkness that could try and keep me down, I have a few ways to manage my illnesses. Mainly, my dogs, who I try and walk at least once a day when feeling well enough. Also, having a supportive partner to help me, and make me laugh helps. Along with my caring mum who is always there for me. My cats are a comfort to me when i’m in bed ill and they are curled up around me.

It took me a long time to realise that I have to pace myself when doing anything and rest often. The main thing is to never give up no matter hard it might seem at times.

 

jo in cornwall landscapeAbout

Jo is a proud cornish maid! She enjoys spending time with her dogs. A mental health advocate and stigma fighter Jo has a Facebook Page sharing resources on how to live with chronic pain, anxiety and depression. The Facebook Page is Fighting depression, anxiety and chronic pain.

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Guest Post - Living with a Chronic Illness while Battling Stigma
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Guest Post - Living with a Chronic Illness while Battling Stigma
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Self medicating the unknown illnesses. Around 20 years ago I lost my Auntie who I was very close to, to alcoholism. At this point in my life, my world turned upside down, and I first experienced depression.
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Mental Health News
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About Alan

Alan is a mental health service user in Cornwall, UK. Although generally the NHS has been very good with his care, their are some weak links. Thats why he started this blog, to share experiences and resources on various mental health illnesses. Also, to bring the headlines about mental health to the foreground. Alan enjoys walking his dogs, taking photos, watching movies and playing the PS4 :-)

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