13 January 2016

It’s good advice not to park on
the double blue lines outside

Good advice to patients … but what should you say to people with invisible illnesses? (Photograph: Patrick Comerford, 2016)

Patrick Comerford

The heavy rain storms have moved away from this area – for the moment at least – and although it’s not quite bright yet when I am going to work in the mornings or coming home in the evenings, the cold weather means the skies are clear and bright and blue.

I left yesterday just as day was closing, and went to see my GP for check-ups for my sarcoidosis symptoms, for a B12 injection, to talk about increased coughing and pressure on my lungs caused by the winter effects on sarcoidosis, to get his opinion about some scars and marks on my skin that I am worried may be related to my sarcoidosis.

It was a long wait, but a wait worthwhile. It was a three-hour wait, which shows how good he is in giving individual attention to each and every patient. I used the time to catch up on reading last weekend’s edition of the Church Times and research on a book I have been commissioned to write.

In the waiting room a notice on the wall warns patients not to park on the double yellow lines. But the double yellow lines on the notice are blue. Perhaps, the person who made this notice has Blue/Yellow colour blindness; perhaps this person is encouraged by the blue skies these winter mornings and evenings.

But there was no need to have the blues as I was leaving the surgery last night. My blood pressure is fine, I have had a thorough check-up, including those lungs and that nagging cough, I got that B12 injection, and I have an appointment for those skin marks and lumps.

A Facebook friend who keeps in touch with many people with sarcoidosis, posted a few days ago about the way people can thoughtlessly react to people with invisible illnesses that cannot be seen just by looking at someone. These include Type 1 diabetes, Chronic Migraines, Lupus, Postural Orthostatic Tachycardia Syndrome, Fibromyalgia, and Sarcoidosis and severe B12 deficiency, the two symptoms I live with.

These may not affect your appearance, but they affect how your body functions and feels. Every day. Probably for the rest of your life.

When you say the following things to someone with a chronic illness, you probably do not mean to hurt their feelings. A lot of the time you are just trying to understand or sympathise. But she lists 15 things you should not to say to someone with a chronic illness:

1. You don’t look sick

Not everyone “looks like” what is happening to them. You would never say “you don’t look like someone who is going through a terrible divorce” if your stressed-out friends still manage to put on a brave face and pull themselves together. Not all illnesses are manifested outwardly.

2. You’re too young to be sick

This one is one I never hear these days. But you can get ill or go through any kind of stressful situation no matter your age. Age is completely irrelevant. When you tell someone they’re too young to be sick, it just makes them feel even more guilty or embarrassed when society expects them to be healthy. And, just because you have an illness does not mean you want to be called “sick.”

3. Everyone gets tired

This may be true, and perhaps most people do not get enough sleep and rest. But the difference between someone with chronic illness and associated fatigue and an otherwise healthy person is the level of fatigue. Everyone gets tired. But my kind of tired is not the same as a healthy person’s kind of tired. If I push myself past the amount of energy I have in any one day, the consequences are pretty bad.

4. You’re just having a bad day

Being able to go for a walk is a good day, and it’s even better if I find myself by a beach, a river or a lake. But it needs planning, and its needs motivation. Not every day is a good day for exercise … but every day is a good day.

5. It must be nice not having to go to work

I enjoy my work, I told my GP last night that I wake up every morning highly motivated. And so I know some people who are forced not to go to work or school truly want to be there.

6. You need to get more exercise

I know how important exercise is. A new app on my iPhone helps me to monitor how much I walk each day, and that acts as an additional motivation. Walking boosts my spirits, but it is not going to cure my sarcoidosis. And you have no idea how difficult it is when a small things goes wrong with the photocopier and I have to walk up and down a double flight of stairs three or four times in succession.

7. I wish I had time to take a nap

Sometimes, I doze off for a few minutes, unexpectedly. It can happen in the car. That is yet another reason to be thankful that I never learned to drive. But I also had a chat about this with my GP last night.

8. The power of positive thinking

I may sound like a grumpy old man at times. You may not see it at those times, but I have a positive outlook – and I know it is not going to take away my symptoms – no more than pulling myself up by my bootstraps is going to cure sarcoidosis.

9. Just push through it

“Everyone gets tired, headaches, back pain … just push through it.” Please don’t tell your friend that he/she is not pushing himself/herself. Pushing past your limits can set someone with a chronic illness back for a while as they recover from over-extending themselves. Suggesting to someone to just push through it is like telling a marathon runner to just run faster on the last mile.

10. It will get better, just be patient

Not all chronic illnesses gets better. It could get better, but it also may not. So figuring out how to live within the confines of an illness and making the most of it is more productive than expecting to get better.

11. Have you tried …

… the gluten-free diet, acupuncture, aromatherapy, a new-age therapy or massage I heard about but know nothing about? … I have a great GP, and he spent a long time studying and training to get to where he is today. I now know the inside of most hospitals, public and private, in Dublin. I need to stay focussed, and I appreciate the skills and knowledge and expertise of those who look after me professionally.

12. You should stop …

… drinking wine, eating pasta, your vegetarian diet, working so late in the evening … But everyone has bad habits and these are not the causes of sarcoidosis. If I knew the causes of sarcoidosis, I would make it freely available and available freely.

13. It’s all in your head/ you’re just stressed/ depressed/ anxious

Some people think that if you do not look physically sick your problem must be in your mind. It’s usually the other way around, so that chronic illnesses can cause stress, depression, and anxiety. Saying something like this only adds to stress and does not help anyone.

14. You need to get out more

I do, I know I do, and I’m planning some extra time in Lichfield and in Greece this year. I know a change of scenery can do me good, and time outdoors is also good for my health. But I do not need to feel guilty for not being able to do something that I already want to do.

15. You take too many medications

Well, my GP has just written me three more prescriptions. And I know he’s qualified more than most to do this.

It might be better to continue advising people not to park on the double yellow lines … or even on the double blue lines.

Feeling blue … blues skies seen on an early morning this week in Rathfarnham (Photograph: Patrick Comerford, 2016)


Anonymous said...

"La vieillesse est un naufrage." -- de Gaulle

Of course when I was young and healthy, I was also impecunious, overweight, and lacking in social graces.

Be assured that I regularly scan your web postings, and look forward to your commentaries on Cavafy, betrayed Smyrna, etc. Also, I love Litchfield Cathedral and, despite being Protestant to a fault, sort of wish Chad's skull had been saved.

Patrick Comerford said...

Thank you, Anonymous. Patrick.

Unknown said...

I was looking up history of Kenure House when I stumbled upon your blog. I too have Sarcoidosis, having been diagnosed when I was 26. My treatment caused further problems which led to having both my hips replaced. That was nearly 15 years ago but I have recently become quite tired again most of the time so im dreading re-engaging with the doctors given my previous bad experience. I have pains in my neck, shoulders and now eye all the time so I think I am putting off the inevitable by avoiding the docs. Sarcoidosis is a real pain in the backside if you will pardon my French.
kind regards