What Not To Say

They say, "Sticks and stones may break my bones, but words will never hurt me." I think I beg to differ. Even to the strongest among us, words can truly hurt and cause a pain that takes time to get rid of. I've mentioned before that with having this disease, you have to have thick skin; because as much as there may be people rallying around to support you, there are people who really don't think before they speak. However, in their defense (well...some of them), they might not know that their simple comment can be hurtful simply because they don't understand your condition and how complicated any disease can be. This is why awareness is so important. And not only for family and friends who are more intimate with your experience, but for those with whom you regularly come into contact. I must say I'm quite happy that I had to search for most of these comments online because I have not been the recipient of many unpleasant comments or questions. Sadly, there are many patients who have. Let's try to understand why these five comments hit hard:

1. "But you don't look sick!"
When we have a cold, there may be a runny nose or sneezing and there's no doubt you're sick. As human beings, I think we like to have those measures of proof that there's something wrong. It makes us more comfortable to accept the information. I have mentioned that some of my symptoms include scarring on my face and hair loss. It makes it kind of obvious that there's something that is not quite right. However, for many lupus patients, there is nothing physical to show that they are sick. You might say their illness is invisible. There's no visible indication that something is wrong. Sometimes there's just this pain, this weakness that you really can't explain and it's called malaise. You can still walk, but your legs feel like lead. You can still swallow, but you have no appetite. You just feel out of it. We don't need to look sick to be sick. Please try not to downplay the way I'm feeling because of the way I look ... or don't look.

2. "You're getting too fat; you need to take control of your weight."
Sigh...this is a personal one that really gets me annoyed. Why people feel it's necessary to comment on weight is beyond me. We all have mirrors and know how our clothes fit. It's not your job to say anything at all. One of the main causes of weight gain in lupus is the fact that one of the common medications is a corticosteroid (different from anabolic steroids usually referred to in sports) called prednisone. These tablets go straight to the point of pain and reduce inflammation in a flash. However, the side effects and long term effects are not pleasant. One of these side effects is weight gain, especially puffiness in the face. You could have a mainly vegetarian diet and exercise regularly as much as want, you're still going to get a puffy face. Also, steroids make you feel hungry, so you always want to eat. It means making healthier choices during these times is very important. A comment about my weight is just reminding me that I'm battling a condition and regardless of that, I shouldn't have to explain how I look to anyone. Not even my closest friends and family members comment on my weight gain, so why should someone I barely know?

3. "Everybody gets tired" or "You're just not going to bed early enough."
Fatigue is a very real thing. It's not something that is easily fixed by sleeping more or being less active. It is an ongoing feeling of extreme listlessness that nothing seems to help. No amount of caffeine, sleeping more, sleeping less, exercising, meditation, or willing yourself to have energy seems to work. Many persons, especially in the workplace, don't understand how anyone can be that tired. Because lupus symptoms are so varied, it can be caused by different things: anemia, inflammation, depression and side-effects of medication. Patients can deal with fatigue by: 1. Trying to figure out the root cause of fatigue 2. Having rest periods of 15-20 minutes after being active for one or two hours 3. Taking medication that decreases fatigue 4. Putting in place measures to get a good night's sleep (ear plugs, masks, soothing scents or music, etc.) and 5. Walking regularly to increase the amount of oxygen in tissues. We'll try to do our part to curtail feelings of fatigue. Please do your part and understand that it's not always that easy.

4. Something I overheard someone say once: "Apparently she has lupus or something and gets depressed. Hello! When I get depressed, I just go shopping!"
Seriously? Your "depression" that is easily fixed with a new pair of shoes is not what we're talking about. For some patients, lupus comes along with feelings of hopelessness and helplessness - some of which can be caused by the mere fact that you're dealing with a difficult disease. There can be spells of crying, loss or increase of appetite, difficulty sleeping, low self-esteem, and loss of interest in social activities. I've seen where quite a few people lose even close friends because they aren't themselves, they've changed too much, or they're not fun anymore. It is not always a choice to "not be fun anymore." Sometimes just the thought of being around too many people is more than one can handle. Why am I going to drag your evening down knowing that I feel the way I do? You might be able to help by sharing some of the nonprescription methods of dealing with depression. This site seems pretty useful.

5. "Oh no, you have lupus? That's what my Aunt died from!"
Thank you. I'm already quite aware of the fact that this can be a fatal disease. I know this comes rushing out of most person's mouths before they realise what they're saying, but please try not to say it. It's just one of those things we don't want to hear...at all. I don't even know how to expound on this one. Just don't say it...please and thanks ;-).

On the other hand...
A lot of people seem to get annoyed when people tell them about natural ways to recovery and the fact that exercise is important. Personally, I welcome that, because no amount of info in that regard can be too much. So yes, tell me about some new doctor you heard of, who is using cactus plants to stimulate your chi and align your chakras to get rid of inflammation (hey....it could be a thing! Lol). That's helpful, because I may not have heard about it and it might be something useful to check out.

Although I still get emotional about it at times, I'm trying a new method to respond to inconsiderate comments. Without saying too much, I let them know that this is not something I can easily control. I would prefer not to be reminded that this is a difficult time for me.  Please feel free to share anything that you have been told or asked that gets you down and how you deal with it. Sick or not, we've all been there. You are not alone.

Blessings...