Sorry this is so late and that I didn't post yesterday. As always I have all the intentions in the world of posting everyday but when it comes to it I can get so ill so quickly I can't always predict what will happen next. Like today for example, I am sitting here writing this with an ear infection that has come out of nowhere to consume my left side of my face in agony. Oh well, that is the life of a spoonie and I have to pull myself together and carry on...which is exactly why I am back.
Today I am going to look at the different scenarios we can be placed in where we have to explain our illnesses to others and the best ways i have found to approach them. Again this is just my experience, yours could be entirely different, but I have found it quite fascinating how each time I have had to explain it it has been slightly different. Bringing me to where I am today, sat here, writing to you and wondering if anyone really gets what I am saying....other than those who are also fighting this great war.
To family, friends and loved ones...oh how we hide some of the worst bits...
Is it just me or do we hide the worst bits of our diseases from our loved ones because we are afraid of upsetting them and causing worry, or is it because we are afraid? If I had a pound coin for every time I explained that I am "fine" I would be a very rich woman. The worst but us that often the people that love us the most are the ones that want to know when we are not fine, yet we can never bring ourselves to say it.
I know for me, that this is because I am afraid that if I say how I really feel I will crumble to pieces and not be able to pull myself back together. This is ridiculous I know, but this is how many of us do protect ourselves when we are really struggling. Explaining to loved ones what it is like to have lupus is a tough thing to do because of our need to protect those that we love and hide them from reality, so here is how I do it.
Firstly I will stick to the facts. This is lupus, it causes swelling, pain, fatigue etc etc. Whilst explaining the facts I have often directed people to certain websites or books so that they can also have a look at what lupus means. This way they can take their time processing the information and I don't have to say much more than the facts at first.
Once this has been discussed I will then base my explanations towards the person that I am talking to. For example I may tell a friend more details about how it's affecting me mentally and then a family member more details about how it is affecting my quality of life. I have certain friends that simply wouldn't understand the physical side but could grasp the emotional side and this is why I have to focus my explanations to the person.
The main things to explain, that I have found to be important, when talking to loved ones is HOW I FEEL. This is often the first things that my loved ones will ask me and this is what I will generally stick to explaining.
To new people in your life...
This is where I always stumble...I am quite useless at explaining to new people why I am always so ill. Some of this is because I hate getting judged and I hate the judgment...especially when people just think I am being annoying because I can't do everything that is needed of me, or I have to always sit down in the pub. This is especially evident when meeting new people through friends etc. You know that moment that you get introduced to someone that you don't know and then you realize you are going to have to get your pill pot out in front of them.....then here comes the questions......
So how do you handle it?? Do you explain it in full, which for me would take hours and probably just bring everyone down? Do you ignore the questions and shrug them off, which will probably just annoy the other people? Well for me I take this approach...
Firstly I will simply state that I have a chronic illness, sometimes I just leave it at that as there is no reason for me to say anymore. If, for example you are meeting new colleagues or similar, then you may have to go into more detail, but remember to keep it just to the information that you are happy to share. I will often state that I have mixed connective tissue disease or just the lupus, i will explain the physical effects and then wait for the questions to appear if there are any. The questions are where it can get tough and it is down to you to say ONLY what you are willing to share.
If the people you are meeting for the first time are people that you will have some form of friendship or working life with then only share what you are comfortable with. i tend to stick to the facts and leave the emotions out of it. For analogies I will usually go with the old faithful....."it's like having the flu forever". That is often the best way to explain hoe it feels...although us fighters will know this doesn't touch the tip of the iceberg. In terms of work mates, I often make sure that they are well aware that I wont let it affect the quality of my work. Or if you are making new friends then I tend to make some jokes about it too lighten the mood....like telling the brain fog stories I have....Like the time I found my tablets in the freezer...because that is where they live apparently.
Explaining your illness is always hard and never perfect...
The main things to remember when trying to explain how you feel about your illness or even what it is are;
- You will never get anyone to understand 100% unless they are going through the same thing. This is not because you are not great at explaining it, you are. This is just because we can never understand other peoples journeys.
- Only ever say what you are comfortable sharing. You do not have to explain everything to everyone or answer peoples questions if you are not happy with it.
- Stating facts and using aids such as websites are really useful to help others to understand.
- Use the spoon theory if you get really stuck as it is a useful tool for many scenarios.
- Remember that your story is important, so if someone doesn't want to listen and learn then they are probably not worthy of it.