Setting healthy boundaries with the outside world.
One of the most difficult things I had to learn (and am still learning) when I became this ill was how to say no to things I knew I was unable to do, without feeling selfish, guilty or overly worried that I might hurt or upset someone else.

It felt like failure. My failure to live up to other people’s expectations and I feared that they would eventually disappear. 

After all, if people liked me only because I would do things for them then it was liking what I could do not who I am. 

Today I realise that it isn’t my failure, but I have also seen a lot of people disappear from my life when I could no longer do things for them or provide as I once had. 

I think in western society the sick or disabled are quickly and silently given the label of needy and not being able to provide anything of value; Especially in a society that only values things. We can feel very disposable to those who we can no longer cater for or give to. 

It really is more a comment on society’s values and not our intrinsic human value. 

However, what can we do about it? 

I have thought about it over the years and have had the following ideas. 

1. We aren’t going to change opinions by feeling guilty and hanging our heads in shame. Owning the guilt that society would like us to is like claiming guilt for a crime we didn’t commit. A terrible waste of time. 

I truly believe that we owe it to ourselves not to buy into the idea that we are unworthy, disposable, unaccomplished or unnecessary. It is the illnesses which needs fixing, not our value or character. 

2. Continue to care for ourselves in the best ways we know how! What greater act of belief is there than self belief? To show people how much we treasure our own needs and care will hopefully teach others how they can enjoy interactions with us and how much we still believe in ourselves.

Example is a wonderful teacher. 

3. Do not apologize for things out of my control. It seems such a small thing doesn’t it? But it has far reaching effects. 

I used to say “sorry for not being able to ….” until I realized I was sick of apologizing for something I had no control of and owning something that was out of my hands. 

Today I replace “sorry I can’t” with “I hope I will be able to …. but if I can’t I trust that you will understand”. 

But if I know that I can’t do something I must openly and honestly say it. The sooner the better. No guilt. No shame. 

4. People will never really understand unless it happens to them… ever. 

So I stopped expecting them to. I don’t expect them to know what constant pain is like or what disability can feel like. They just don’t. I didn’t know what it was like when I was like them! 

If someone cares enough to ever ask me something about my challenges I will honestly answer them, but until then… 

5. Although this is not the life I would ever choose for myself, it must be lived in a way that I can try to appreciate. 

It is now my responsibility to look after me and look for opportunities where I can get some meaning and joy from living.  As opportunities and abilities have lessened, it makes it even more precious to use any time and opportunities for happiness that I can get; or try to get. It’s not selfish, it’s imperative. 

If I have one day a month where I am not in as deep pain, or able to move from my bed, you can bet your last dollar I am going to enjoy something nice for myself on that one day!

Even if many people out there no longer see us or cherish us as we are now, we have to. And I hope we do. 

Gentle hugs, 

Trish.