Living with a chronic, life threatening disease is not an easy thing to do. Often times it takes up your entire life. Doctor appointments, tests, medications, commute to specialists, hospitalizations, waiting and waiting for results and more. Then there is the disease itself. For me it is horrible rashes on the skin that do not go away, sometimes causing disfiguring scars, swelling of my face, hands, feet, and legs, fluid in the lungs, coughing and bleeding in the lungs, shortness of breath, inability to walk very far without pain in the lungs, heart problems, kidney disease, joint pain, bruising, cuts and scrapes appearing from the slightest touch, poor eyesight, and more. Then you have the medication, the tiredness, weakness, dizziness, nausea and vomiting, the shits, gagging, fatigue beyond normal, inability to control your muscles, bone loss, hair loss, sores in the mouth, teeth problems, osteoporosis, weight gain, weight redistribution (often to the stomach face and neck), hair growth, rashes, overheating, easy bruising and bleeding, inability to tolerate heat and sun, dehydration, and more. With all of this you try to make it day by day. Often it is hard to just get up and shower, let alone go to work. So I do not work right now. Because of this...people assume I have it made.
People have said to me that I am lucky because I do not have to work. That they wish they could be in my shoes, not having to work, being able to do whatever I want...the trouble is, I DO NOT GET TO DO ANYTHING I WANT TO DO! I am a prisoner in a body that is too fat from meds, too weak from disease, too scarred up from pain and rashes to be able to participate the way I want to in my own life. Often I sit here, alone, wishing I could have the energy to go out for a movie, but I know if I get ready I will be so tired I will want to go to bed again. I wish people would see that this is not a choice. I would give all my free time in this world to be able to be healthy. To be able to work, to not be looked down on as a drain on the system because I am on disability and medicaid and food stamps and housing. I would give it all to be normal....to work, to be busy and only have weekends off...if that is what it would take to not suffer daily.
Every time someone says something like this...how lucky I am, it hurts me. I do not let people know it hurts me, because I don't want them to know it hurts me, but it cuts me deeper than a knife. It reminds me that people do not understand, and even those who I love, and who I know love me, well even they are not understanding that I am not living it up. There have been days I have been on the floor screaming and sobbing, begging whatever god is out there, or whatever is listening to let me die already because the suffering I went through was unbearable. They do not know the times I thought of ending it all because I felt as though I was nothing but a drain on this world. They do not know the times I have begged for understanding, only to be met with judgement. They do not mean to hurt me, but they do not understand.
Before you go talking to a person with a rare, chronic, or life threatening disease, please listen to me...our life is NOT normal. You CANT say how lucky we are. Maybe instead of looking at the fact you have to work and I do not, look at the fact I could die at any time. I could go to bed, have a lung bleed and die. I could go into acute kidney failure and never wake up. I could stroke out, or die from my medications. Many times I have been too scared to go to sleep because I Was feeling so horrific I was literally afraid I would never wake up. I face my death every day of my life, and it is anything but a party. For me, my body is my prison and my warden. I do what it tells me, even if it means I lay in bed all day unable to move. Why am I writing this? Because it hurts me to hear this stuff all the time from numerous people. You can't possibly wish to be like me until you know what it is to fight to stay alive, and to know what it is like to struggle for things as small as a shower. Please, think before you speak.
The following is taken from Lupie Thoughts, and it about says everything I could explain about this.
Worst Things to Say to someone with a Chronic Illness
1. The one that tops it is ’but you don’t look sick.’ 96% of chronic illness and disability is invisible. People expect sick people to look a certain way, and if they don’t, they do not believe the person is chronically ill.2. You need to think positive. This one is quite annoying. If thinking positive would cure us, we wouldn’t need toxic medications…it’s not our fault that we have a chronic illness and being told to ‘think positive’ implies that we are somehow to blame for our illness.
3. Maybe you need to get out more. This is especially infuriating if you’re too ill to ‘get out more’. We do not choose to be house-bound and if we could, we would get out more. I was house-bound for 2 years and hated it, but there was little I could do about it.
4. I wish I had the time to sleep all day. Many people seem to think we enjoy being at home and falling asleep all day. Again, we do not choose this and it’s hurtful when people think we choose it. Grr.
5. Maybe you need to exercise. Yes, I do understand that exercise can be beneficial in some cases. But it is very hard to exercise when you’re barely able to get out of bed and dress yourself. We’re not lazy.
6. Get well soon. I wish!
7. It’s all in your head. Doctors are especially prone to telling chronically ill patients this. When explanations for symptoms cannot be found, it is automatically assumed that the ill person is imagining or faking or exaggerating it. Another GRRR, this time in shouty capitals.
8. Everyone gets aches and pains. But not everyone needs painkillers and toxic medications to deal with it.
9. You just need more sleep. I already sleep and nap enough during the day, because at night, pain often keeps me awake. People must think we’re party animals, staying up all night! (We still get hangovers even if don’t drink).
10. You’re just depressed. Firstly, depression cannot be described as ‘just depressed’; it is so much more than that. When I get it, I go completely numb, cannot talk, can’t move, do not eat and I don’t get out of bed. It is the worst feeling in the world. I completely detach from myself and wonder if I’m real or not. Secondly, depression is either a response to chronic illness or a primary symptom (e.g. as in lupus, fibromyalgia, chronic fatigue syndrome, MS etc.). Being told you’re just depressed is not helpful at all.
11. There are others who have it worse than you. But suffering is subjective and each person’s idea of pain is different to someone else’s, and you cannot measure it. We’re not competing for the Sickest Person of the Year Award. We should not feel guilty, because wherever we go in life, someone is always bound to worse off than someone else. That’s life. This is my body, my pain. Do not tell me what to feel.
12. Maybe you need to improve your diet. Again, there is the implication that chronic illness is somehow our fault; that eating the wrong diet caused it. In many cases, chronic illness sufferers lose their appetite or are on steroids (which often increases appetite) and both can make it difficult to eat an extremely healthy diet. The other thing is, chronic illness can make us feel pretty poorly. If eating a yummy cake makes you feel better, then go for it.
13. I wish I could sit on the couch all day watching TV and not go to work. Sitting on the couch all day watching TV is incredibly boring, but again, we do not get a choice. If we could work, we would. I’d rather earn a decent salary than paltry benefit payments, but what can we do.
14. It can’t be that bad. Well, how do you know? Would you like to swap bodies with me for 24 hours??
15. My aunt had this condition and she got better. Every chronic illness sufferer is different; it is wrong to paint everyone with the same brush and put unfair expectations on a chronically ill person.
16. You’re sick, again??? Like I choose to be!
17. Its just stress. Again, not everyone with stress needs to take painkillers and drugs to deal with stress.
18. No pain, no gain. But chronic illness is not like being a sports-person or having a bikini wax. Also, how about we swap bodies again for 24 hours?
19. Are you sure you should be taking all these meds? Last time I checked, you did not have a medical degree.
20. Can’t you just take an aspirin like everyone else? Er, no.
21. ‘These meds are very addictive’, the doctor says, shaking the medicine bottle. ‘We don’t like to encourage their use.’ Doctor, would you like to swap bodies?
22. You just need to drink more water. I hear this every time I mention that my disease can affect the kidneys. Grr.
23. You’re always too sick to hang out. Stop being anti-social. I’ve lost many friends due to a lack of understanding. Over the years, I’ve learned that if ‘friends’ are going to act like that, and then they’re not real friends.
24. You just need to take your mind off being ill. It is very hard trying to take your mind off illness, if you’re in pain and extremely fatigued 24-7. What do you suggest? Jigsaw puzzles?
25. You need to be strong. Sometimes, chronic illness sufferers are forced to wear a mask; being ‘strong’ to please others. We do not need to be told to be strong if we’re already are. The strongest person in the world will get bad days. We all do, because we’re human and we need to let our feelings out. Bottling our feelings up can be psychologically damaging. Do not feel guilty about having bad days.
So next time please, think before you speak. Understand I am working harder than any of you could imagine fighting to live every day. Just because I am not getting paid cash money for my fight does not mean I am lazy or enjoy it. Treat me how you would wish to be treated if you were in my situation.
