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Sunday, 23 February 2020

I want to talk about Lyme Disease: How to help those with an invisible or long-term illness


I want to talk about Lyme Disease: How to help those with an invisible or long-term illness


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Disclaimer: I am not a medical professional however these posts are based on my personal experience/knowledge as I have had to become my own medical advocate as it is so, so difficult to get help for this illness. 


As awful as it is to suffer from a long-term or invisible illness, I often think it must be worse to see the person you love suffer (I know that I am glad that it's me rather than my husband). I'm sure most people would say that they would swap places in a heartbeat when they see someone close to them suffering at all, but this isn't possible so let's be practical about what you can do to help that person and also what not to do.

What to do:

First of all, believe them and listen to what they have to say. Just because something isn't visible, doesn't mean it isn't real - if this were the case, there would be no faiths or religions in the world! Listening is very important - whether it's letting the person just vent (where they don't want you to offer a solution, they just want to let off some steam) or listening and helping them to figure out what is wrong. Believe them - it's as simple and basic as that. Nobody would actually choose to have their life ripped from under their feet. 

Try to put yourself in their shoes and show some compassion. Just because a person puts on a brave face or doesn't let their pride show people how truly ill they are (I still do this!), just take a moment to imagine what it must be like to have your life put on hold and be in limbo for years, put on the medical scrapheap. 

In practical terms, offer them lifts to appointments, offer to wash their hair (a monumental task for those of us who are chronically ill), offer to batch cook some meals so that on their worst days, they have some food to eat. 

Educate yourself on the illness. Do research, read forums, blogs, books - anything you can, to find as much information as you can. Don't then regurgitate it all to the person as it will probably be too much for them to take in but educate yourself so that you can help them because chances are, their brains are foggy.

Do things for them without them even having to ask or feel like a burden. If you're with them for a few hours, put a wash on, empty the dishwasher, leave a plate of snacks with them.

Remember them for who they are rather than letting the illness define them. This is very important as there is a lot more to a person than one thing, even if it does affect every aspect of their life.

Talk about regular life with them so they feel included. Very often, for people with long term or invisible illnesses, the only new people they meet are other patients and doctors. They feel like they have no news and nothing to contribute so make them feel included. Also, it's nice for them to know what normal life is like, afterall, that's what they're aspiring to - a regular, normal life.

Show them you care. Ask them how they are. When you've been ill for a long time, people stop asking how you are and you can feel invisible - make sure they don't feel that way.

What not to do:

Unsolicited advice is never welcome - oh I knew someone with that and this herb cured them or (even worse) oh yes, I've heard of that - someone I knew died from it!

Don't dare even try to compare their fatigue to that of a parent - that is a lifestyle choice, which brings with it a natural tiredness. Being tired and fatigue are in different leagues. Feeling like you've been poisoned and being in constant pain on top of fatigue is nothing like having some sleepless nights.

Don't suggest that they have children as the hormones will sort things out - seriously, just don't!!

Don't force them to do anything that they don't want to do - you might think that a walk will help them but that's just your opinion. You don't actually know how they feel.

Don't give up on them. Just because they can't make events like they used to, it doesn't mean that they are choosing not to. Chances are, they are absolutely gutted to miss your birthday party/christening/wedding. They're still the same person and a true friend doesn't give up on you.

Don't assume that just because they get out of the house once in a while, that they are better. You have no idea what they will have gone through before or after that occasion, which might be as simple as going out for a slice of cake. If they go on holiday, the illness isn't left at home, chances are they are still in bed at 9 and still suffering (although the sun does help with bone pain). The illness goes on holiday with them!

Don't assume because they 'look well' that they're okay! Makeup and fake tan work wonders! Honestly, some days you would have no idea how ill I am but as my sister in law said - it's my 'war paint' and I put it on almost in defiance of how I'm actually feeling but I can always see the illness in my eyes. Even in my wedding photos, I can see that the twinkle in my eye that I was renowned for, wasn't there. When I look back at any photo pre-illness, it's the first thing I notice.

Don't dare ever assume an ill person is lazy, has no ambition or has accepted this as their fate. You have no idea what is going on in their heads. In my head, I'm ready to run the world but my body tells me I can't run a tap some days!

Above everything, the key is to have compassion, be kind and just be grateful that it isn't you. Realise that whatever you have to moan about is probably nothing in comparison to what they're going through and use that perspective to live the best life you can. 

Thanks for reading! 


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