Into visible illness

Since I was young I have had an Invisible Illness(es). This is a distinct experience with distinct problems.

I have invisible disabilities:

• Chronic Migraines
• Fibromyalgia
• Chronic vertigo (Rides the line of an invisible disability for sure as I will mention but certainly it can’t be Seen)

That cause the most problems for me for most of my life, aside from vertigo which was new to the list. I also have hypermobility syndrome which I don’t talk about much (It effects things but no doctor gets it so sort of moot), hypothyroidism, IBS, RLS, mild arthritis. And drop foot.

Pain can be doubted. People can’t see it. So they can doubt it is as severe as it is. They can doubt it is even there. They can think we are exaggerating. Because with chronic pain we tend to lose our pain behaviours we are doubted more because we don’t play the part they expect someone in pain to play- unless we try to play the part. I don’t and often I am called ‘stoic’ which I despise. I have a learned pain tolerance. That is what that is. I am in a lot of pain. And I have pain behaviours but they are different ones. Because I have to adapt to being pain in society, I have learned to hide a lot of pain, so the behaviours I have are not seen as pain behaviours. But they are there. Or I know what they are but others can’t see them or know them for what they are. Too much pain and, of course, they do not see me at all because I am curled up in a ball on the couch.

Many would see this as a surprising thing for me since I am actually a pretty emotive person. Just not with pain. You just learn to hide it. You just learn to function with it- try to anyway. And that has an immense price.

Visible disabilities

• Vertigo
• Drop foot

I am starting to slide into visible disabilities. Vertigo was the start of that. Because with vertigo the ground would always move under my feet and I would constantly sway or even fall to the side. Well. That looks like I’m drunk. A few comments about drinking in the morning by random bystanders and I got a cane- which definitely helped with my stability.

I went to the vestibular clinic which helped me- while I was there. And not so much while I was not there. The vertigo can get a bit better sometimes and then way worse- it comes in waves. Anyway, they told me not to use the cane because they wanted my brain to adjust itself. But, unfortunately, while in therapy I developed drop foot.

Drop foot means it doesn’t take much walking before I can’t really pick up my foot and I am dragging it and my leg. When it is mild it is like the foot is just sort of sliding on the ground and not picking up and the leg is lagging behind the other.

So sort of need a cane now. Not for really short distances. But getting to the point I need to bring it anyway because my legs are both weak and stiff at the same time added to the drop foot. But I have no doubt people wonder why I have it when my walking appears half decent. Because you can’t see the effort it takes or feel the weakness. And you can’t see the drop foot yet, not until it really drags and by then, well, I have a hell of a time.

I find people will hold the door open for me a mile before I get there- at my slow pace. Not sure what to do about that. I can only go so fast. I sort of try to put oomph in but it never works because I actually have no oomph. It is nice of them though. That sort of nice gesture is not the sort of thing you get with an invisible disability as they judge you for using the handicap parking. Judge you for missing work. Think you are lazy. Question your pain.

Mostly I have the feeling I should be spitting out motivational quotes or accepting their pity. And I am stuck between these two with a visible disability with random people. Thankfully, people I know are not like that- who has that many motivational quotes stuffed up their sleeves? I do have the strong feeling if anyone calls me brave I may throat punch them. I’m kidding of course- I don’t have the strength for that. Someone would call me brave and I would gently caress their throat with my so-called punch and it would be quite awkward. Instead, I just do a small smile and nod. Yes, I am in fact aware I am using a cane. Yes, I am also aware my limp is getting worse as I am walking. Far worse if I fall and have trouble getting up- which is why I exercise- so I Can get up when I fall.

The visible in the invisible

Either way, with invisible disabilities we tend to have visible features. Just predominately invisible. Mostly with invisible illnesses we have Visible Impacts on our lives. Whether people believe our illness or not the Impacts are there on our lives- social lives, financial impacts, career impacts, mental, emotional and physical impacts. We face the stigma, which has an impact. We have immense stress, which has an impact. We struggle to cope and pace- which have an impact. Sometimes people will see and notice the impacts even if they cannot see the chronic illness itself. Some days though we are more visible than other days.

Oh, you look so tired.

Yeah, I look like a damned zombie. Thanks. Not enough make-up in the world to cover this look if I wore it.

And it can tip into the other with just one symptom change. Tip into more visible. I personally am not fond of it at all. Because I have lost the capacity to exceed my pain limits if I so chose- for a specific reason- and paying the consequences of that choice but making the choice regardless. Because now, that weakness and leg make the choice for me and it is a damn hard limit. I have not quite figured out this mobility issue yet. I have a lot of invisible features to my illnesses and just a few visible ones. The cane though is a signal that says ‘Hey, something is wrong here so shut the hell up about it’.