What NOT to say to someone with Sweet’s syndrome!

Do you know someone with Sweet’s syndrome (SS)? If you do, please don’t say the following things to them. Unfortunately, they are things that people with SS hear all too often, and even though a few of them are well-meant, some come across as insulting and thoughtless.

What NOT to say to someone with Sweet’s syndrome!

1. ‘But you don’t look sick’ or ‘Are you faking it?’

The commonest symptom of SS is tender or painful skin lesions, but these are often covered up in some way, e.g. with make-up, by hair or clothing. SS causes lots of other symptoms too, but most of them cannot be seen. However, just because you can’t see these symptoms doesn’t mean that they don’t exist, or that someone with SS isn’t very sick or that they’re faking being ill.

2. ‘You should try this new diet or supplement. It can’t hurt to give it a try.’

SS is an autoinflammatory condition caused by errors in the innate system, and there’s no special diet or supplement that can correct these errors. Sometimes, a change in diet or certain vitamins and supplements might help to improve overall health, but they’re certainly not a replacement for proper medical treatment. Some of these diets and supplements can even do more harm than good, and be very costly. For example, restrictive diets can lead to nutritional deficiency and health problems; certain supplements may not be safe to take or interact with medications; special diets and supplements can be something that many people with SS really can’t afford to buy, and their money could be better spent elsewhere.

3. ‘I’m too busy to get ill’ or ‘You need to keep busy and just get on with it!’

Never flippantly or smugly say to someone with SS, ‘I’m too busy to get ill’. Being busy is not a protection against illness, and no matter how busy or in demand you are, illness can still affect you and stop you from doing the things that you want or need to do at any time. People with SS don’t choose to get ill, and even when they desperately want to just ‘get on with it’, they can’t. Keeping busy isn’t going to make SS go away or lessen its impact, and doing too much can sometimes make symptoms worse.

 4. ‘I wish I had the luxury of being sick so that I could stay at home all day’.

Being sick is not a luxury, and most people with SS would give anything to be well again. They don’t enjoy being ill (do you enjoy it?), and can get very frustrated and depressed because they can no longer work or do the things that they once did. In fact, some people with longer-term SS go through a grieving process where they mourn the loss of the person that they were and the life that they once had.

5. ‘If you learnt to cope better or didn’t get stressed then you wouldn’t be sick’.

As already mentioned, SS is caused by errors in the innate immune system, and at present, there is no evidence to show that it is directly caused by stress. Some people do find that their SS gets worse when they are stressed, but this might happen for a number of different reasons, including their steroid medication being reduced or stopped. However, in others, their condition flares-up when they’re not feeling stressed at all, and it’s ridiculous to expect those with SS to avoid stress completely. Living with SS can be very stressful in itself, and for all of us, stress is part of everyday life.

6. ‘Don’t give in’, ‘Stop complaining’ or ‘Why do you have to be so negative?’

People with SS are not giving in or being negative when they admit to having a bad day or struggling to cope with their condition. They have the right to have a bad day, just the same as anyone else. No-one can be upbeat, positive and optimistic all of the time, and having a moan or rant or even a bit of a cry can be very healthy, allowing you to release your feelings and reduce emotional stress.

BEE sweet! 🐝 💛 🐝 

2012-2018 Sweet’s Syndrome UK


2 thoughts on “What NOT to say to someone with Sweet’s syndrome!

  1. Hi! My name is Angelica I had sweet syndrome I was diagnosed last 2014.Since then, I’m always feeling unwell I usually admitted in the hospital 3-4 times a year, need treatment but always leaved me a big question mark on my mind, I had chronic joints & muscle pain all over my body, gets rashes like lumps on my skin, Terrible headache, always trigger my urine infection, kidney infection if I’m admitted in the hospital due to my blood test e.g high ESR & high CRP,I’ve got loads of complications if I’m feeling unwell with my sweet syndrome I need help from your group.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s