Glimpses into living life with an autoimmune disease (Hashimoto's Thyroiditis), postural orthostatic tachycardia syndrome (POTS), postural hypotension and chronic fatigue syndrome (CFS/ME)...ideas, experiences, the struggles, and the successes!

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I love finding new worlds through writing and reading. I am excited by creating new flavours and tastes in the kitchen. I am fascinated by nutrition and healthy lifestyle choices. I adore my my dog, family and friends.

Thursday, 3 January 2013

Glimpse into supporting your unwell loved ones

When you are sick for a long time, you are subject to such a wide range of reactions from people.

Over the years, I have had countless hours of sick leave, including having to leave shifts early. My fellow employees and employers have always been amazing though. They are so understanding and helpful, even when I didn't know what was making me unwell; I guess that is the upside of working in the health profession.

People who say "it is ok, you'll be right", think they are being supportive, but when you feel like death warmed up, have missed weeks of work and haven't done a fun, social outing for months, it is beyond frustrating and blood boiling to hear! Whether this is based on their experience of thyroid conditions through friends or family (possibly not even Hashimoto's), or they make this observation with no knowledge or experience whatsoever of what you are going through, or even if they themselves have Hashimoto's, it can be so upsetting. If they are one of the lucky ones who, although they may have suffered from the effects of Hashimoto's, now take medication and have had no issues getting the correct dose, then they don't understand what it is like to feel the frustration and be on the roller coaster of trying to find treatment. I in no way resent them for this; I am so happy for them that they don't feel this frustration; that they have been so lucky to get on top of it, but they definitely aren't helping you with their comments!

You also get people who are amazing; who help you with all the little things that seem like nothing when you're well, but are massive feats of endurance when you are unwell. Someone who empties the dishwasher for you is an angel in disguise. A visitor who drops in, makes you a cuppa and sits on the couch with you for a chat and then leaves before you need to say you need to sleep is an unbelievable contribution to your sanity! Even a text to see how are you, or an offer to pick you up and take you to their couch for a change of scenery is unforgettable. The little things are definitely the most important. Support your unwell loved one by thinking about the things they need so they don't have to ask.

I have found that the loss of independence impacts on your life so much. I can't drive at the moment because I have been too dizzy and lethargic. This means that I spend so much time indoors, often alone. It means things like getting groceries and seeing other people are hard (these type of things are also affected in that I struggle to actually do groceries etc).
It also means that you are always asking for help, which can be bad for your self esteem, and your happiness. I have had several issues with people wanting me to tell them how I want them to help and what I want them to do. That makes you feel like they don't really want to help because if they had no issue then surely they would just skip their dinner out to sit with you while you're in pain, or they would just go out and get you food if they can see that the fridge is empty. So then you say don't worry about it, and then end up lonely and hungry!! So the key is, please remember the little things when you know someone who is unwell!

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