Why I Only Tell Those Closest to Me When I'm Not 'OK'

I have learned that when an acquaintance, some family members or even a friend asks me how I am, they don’t really want to hear my answer. So I answer with “I’m fine” or more simply “OK.”

An explanation of the reality is not want people really want to hear. They often want to just get on to the really important stuff in the conversation. They don’t want to really hear about my reality.

I have thought about the reasons for this. I have come up with a few possibilities:

1. They’ve heard it all before and don’t want to hear it again.

2. They are impatient and want to get to the fun part of conversations.

3. They don’t really care.

4. They only ask as a polite conversation convention.

5. They think I go on and on about being ill.

6. You look OK; thus, you are OK.

7. They think you are exaggerating, and maybe enjoying being ill!

8. They are not prepared to give you the time needed to explain.

9. They don’t accept that I have a chronic condition that is always present.

10.  They are really just too busy to listen.

So, I have found it easier to just act as if I’m OK – that I can breathe, converse and keep up with them. But the truth is I can’t.

I get very, very short of breath. I get fatigued and this is very different to being tired. Some days I can’t really have a long conversation because I don’t have enough breath. I have to check on my physical well-being several times a day. I have to be careful what I eat. I have to make sure I drink enough water. I have to make sure I carry a whole handbag worth of stuff: my puffers and a spacer, a copy of my asthma plan, my glucose tablets, my glucose meter and test strips, jelly beans and snacks, wipes to clean my hands for a blood glucose test and a water bottle.

If I start to get a headache and the shakes, I need to stop whatever I am doing and check things out. Same if my vision gets blurry or I suddenly start to feel nauseous. I have to make sure I eat at regular time intervals. I have to make sure I don’t try to do too much. That is hard! I have always pushed myself, but I cannot afford to be that person any more. If the air is smokey, dusty or there are fumes, I will start coughing and have to leave. Even very strong perfume can be a trigger.

I have to be prepared. My non-ill friends do not need to do this. If I go out and the one-hour outing turns into three or four hours, I can be in trouble. After three or four hours I will be getting so tired that I really should be lying down. I can be so tired that I should not drive.

But, I say I am “OK” rather than explaining everything I have to do and everything I need to keep track of every day. I don’t have the energy either to go through the details over and over. With people closer to me, like my husband, I do actually explain how my breathing is, how my diabetes is.

I start each day with measuring my peak flow and oxygen saturation and what my glucose levels are. I don’t just say, “I am OK.” I try to be open and real. Sometimes, I just want to forget all about it! But I can’t. Some days, I really don’t want to talk about it either. But my husband needs to know. He needs to know so he can understand what I can and cannot do each day. Do I need a very quiet day, can I go to the shops with him, etc. He also needs to know when the situation changes during the day.

So, “OK” is what I choose to say. I don’t want to be seen as the illness either. If I am “OK” I will be treated as if I am OK too. There are only a few people who get a real answer.