Wednesday, 19 March 2014

The Kingdom of the Sick

A chronic illness is "a long-lasting condition that can be controlled but not cured."1 I suffer with several chronic physical and mental health illnesses. Living with these chronic illnesses is challenging; it is unpredictable, exhausting, painful and I have no control over it. It affects every aspect of my life, and affects the lives of those who love me. I am 29 years old and I am bedridden 90% of the time. I have no friends because I am too busy hanging out in hospitals and party time is medication time. Sometimes I feel like giving up because I am too tired to fight, but that never happens. Life is a constant medical drama, but I ride with it because it is the only way I can stay alive. This is my life; this is the way the cookie crumbles.   

Over the years, I have learned that there is a gulf that exists between the kingdom of the sick and the kingdom of the healthy.2 People do not understand chronic illness unless they are living with chronic illness(es) themselves. Those without a chronic illness seem awkward around sick people. Bethany Kandel, in her article for Living Strong Fitness, "How to Talk to a Friend Who's Sick,"3 writes, "It’s a natural human reaction to feel awkward in the face of illness, but what you don’t want to do is make the sick person feel worse." The writer adds that most people "know someone who has a chronic disease. But most have no idea how to talk to them about it. Some people simply ignore the issue, even going so far as to drop the friendship because they don’t know how to deal with it." 


People with a chronic illness are widely misunderstood. The only way we can help people understand us, is to talk about it and share as much information as we can about it. Though you may encounter those who refuse to open their minds, in most cases, people are willing to listen and you will meet people who "I know someone who has that." 

For the rest of this post, I will attempt to clear up some common misunderstandings about chronic illness and offer you practical advice on how to deal with it.  

Misunderstanding #1: "You're still sick?"


Whenever I am well enough for visitors, they will not have seen me in a while and will exclaim: "What? You're still sick??" Yes, I am still sick, because I have a chronic illness. I am sick all day, every day and have been for years, and most likely will be for many more years to come. I cannot escape it. I envy healthy people who get the flu and complain about it like they have the plague. At least they will recover from their symptoms and go back to normal once they pass. I cannot remember what it is like to not be sick, and not to have to time my life around meds, naps and medical appointments. And though I am always explaining this, every time I see the said visitor, the same thing happens next time I see them: "What? You're still sick?"  


Misunderstanding #2: "I saw you out and about last week. You must be better now!"  


The only time I leave the house is for medical appointments or to drag my carcass to university. It takes a massive effort to get out: medication, self pep-talks, cursing, fighting, slipping and aching, and by the time I am ready to leave, I am ready to go back to bed. Just because you have seen me outside, it does not mean that I have been miraculously cured. On good days, I can see my friends and loved ones, but on bad days, all I want to do is hide under my duvet all day and I do not feel like socialising. I want to be left alone. Socialising, when I'm feeling like a dog's rear behind, is exhausting. So I end up having to cancel any plans and usually, people respond with, "but I saw you yesterday and you were fine." And what about the other six days, when I was stuck in bed? If I am having a good day, it does not mean that I am better. It simply means that I am having a good day. Tomorrow could be different. 

Misunderstanding # 3: You're always cancelling on me. Don't you want to see me? Are you ignoring me?"


When you are chronically ill, it can be difficult to make plans. I never know when I will have a good or a bad day until the day in question. Most people plan things in advance, which I understand because people are busy and have jobs and other responsibilities, but it's near-impossible for me to plan anything. But sometimes, I do make plans, usually because I feel mean for always 'letting people down,' despite knowing that there is a high chance I will have to cancel on them anyway. Often, I do not have the strength to say "No". I have missed so many weddings, funerals, birthdays and other important occasions over the years that I have lost count, I hate myself for it. People do not realise how bad it makes me feel. 

I have found that the best thing to say in these circumstances is "Please know that I try my best and I love you, but if I have to cancel plans, it is nothing personal; it's because I am sick." And please do not give up on me and stop inviting me anywhere at all.   


Misunderstanding # 4: You are always sick! 


That is because I AM sick! That is why my illness is a chronic illness. And don't I know it! Unfortunately, I have absolutely no control over my illness and I cannot just switch it on and off to please people (though I wish I could...permanently!) It is there whether I want it or not. It takes a lot a Vulcan amount of self-control not to retort something like "Oh, I am so sorry that my illness is inconveniencing you! Just wait here one minute, I'm going to yank out Lupus and ask if it would mind vacating my body whenever you drop by." 

Do not let anyone blame you for your illness and please do not ever blame yourself for it. If you do, I want you to repeat the following words to yourself: 

"It is not my fault. I did not ask for it. It happened. Illnesses happen because shit happens. There is nothing I can do about it. All I can do is fight it and live the best life I can under my circumstances. If my illness is out of control, it is not my fault either. I do not hate myself, or my body. My enemy is not myself, or my body, the enemy is the disorder. This is my life. I am doing the best I can, and that is enough."


Misunderstanding # 5: "How are you feeling?" 


I appreciate it when someone asks how I am feeling, because it is kind and 99.9% of the time it is out of good intentions. But sometimes I find this question very difficult to answer. Do you say the truth? "I'm feeling terrible today, my body is a wreck, lupus is a bitch and all that," or do I don the "I'm fine" (but not really) mask? Or try the "I'm great, don't worry about me" thing and pretend that I don't have a chronic illness, and that I don't need to take handfuls of pills everyday, with simple tasks requiring several naps and bucket-loads of painkillers

If you are genuinely interested in how I am feeling, you must accept my answer whatever is, whether it is positive or negative, even if I am wearing a mask. If you ask for the truth, you will get it, blood, guts, gore and all; and if I wear the mask, it is because I do not want to talk about how I am feeling at this time. 

Understanding A Loved One Who is Chronically Ill    


People say stupid things to sick people because they do not understand being chronically ill. They do not know what to say; they do not know the code, the 'sick person's etiquette'. 

If you are a friend or a relative of a loved one battling chronic illness, there are many things you can do to help and understand your loved one: 

1. Just be there for me. This is the most important thing you can do for me. This is what chronically ill people want more than anything else in the world. People with chronic illnesses want reassurance that you will stick by them, through the good and bad times. Even if you do not know what to say, being there for me is what I need more than anything. People with chronic illnesses are afraid of being abandoned by their our loved ones, because we are afraid that they will not be able to cope with our illness. Please be there for me and never give up on me.   

2. Show that you care. Following on from the point above, showing that you care is the second most important thing to a sick person. "Show you care. That’s the key even if you don’t know what to say or do, be there for the person," Kandel advises. When you are looking after a sick person, both carer and sick person may often "forget the simple things that make us respect and love one another as family members," according to Linda Foster, in her article for CarePages. She adds "Taking the time to show someone you care can go a long way toward helping your loved one during a difficult time," and offers a list of the things that you can do to show someone that you care:
Six Ways to Demonstrate That You Care

There are many ways to show a loved one who is ill that you care:

  • Offer to be there whenever your loved one needs to talk, even at three in the morning — the middle of the night is the worst time for many who are seriously ill.
  • Never look shocked when you see how your loved one’s appearance has changed, and certainly never bring it up it. They are well aware of it. Don’t compare your loved one to anyone else in the same circumstances — this doesn't help.
  • “Do not let your loved one get away with things that might be harmful or wrong, just because they’re ill...Sometimes they need a wake-up call.”.
  • Watch movies with your loved one, even if you hate the movie she chose; you can watch what you like some other time. That is what kindness is all about.
  • Remember to be grateful when your loved one is able to get up and make dinner for you, or if your loved one attempts to help you with a home repair.
  • “Your loved one’s illness is very personal; show respect for their privacy. Do not discuss their situation with friends or strangers without permission. Trust is invaluable".


3. Learn about my illness. When looking after chronically ill loved ones, read up on the illness and learn as much as you can about it. The more you know, the more you will understand and the more you can help your loved one. Learning is the key to understanding. Always have an open mind and be willing to take steps to understand what your loved one is going through. If you need to ask your loved one questions about what you are learning, ask away! The more you ask, the more you learn. The first thing my mother ever taught me is that "knowledge is power." By learning about your loved one's illness, you are empowering yourself to help your loved one and help them fight back.  

4. Visit Me. When we are well enough, it is nice to receive visitors. I may not get out much, and have to cancel on you a lot, but it does not mean that I do not want company. Being chronically ill can be isolating because it is difficult to get out or make any plans. In most cases, I end up cancelling any plans and eventually, people stop inviting me anywhere and forget that I exist. I am still here! I am still alive! Please drop by for a visit! But before you visit, the article advises: "If you’re going to visit a sick person, first make sure they really want you to visit. Sometimes just dropping off their favorite food or writing a note telling them you are thinking of them may be enough. Don’t overstay during a visit because you think your friend wants company; actually ask and get them to tell you the truth. And don’t expect to be entertained." If I have a bad day and I do not feel like having any company, please do not take it personally. When I am feeling up to having visitors, I will let you know.  


5. Talk to me. As previously written, many people find it difficult to talk to sick people because they are unsure of what to say, or are afraid of saying the 'wrong' thing. So let's make it simple. Letty Cottin Pogrebin, the author of How to Be a Friend to a Friend Who's Sick, has these simple rules:4 

" The main three things you ought to be able to say to someone who’s sick:

1. Tell me what’s helpful and what’s not.
2. Tell me if you want to be alone and when you want company.
3. Tell me what to bring and when to leave." 

Kandel adds, "Ask if they want to talk about their illness, and if they do, really listen without judging, interrupting or offering your solutions." 

But, the most important thing to do is talk to me exactly the way you did before I got sick. I am still me and I have not changed, despite the war my chronic illness is waging against my body.

6. Don't bother with platitudes. As a sick person, I am used to hearing platitudes. People often resort to platitudes because they do not know what to say. Hearing platitudes all the time gets very boring very quickly. Kandel suggests avoiding "hackneyed platitudes, empty eloquence, and feel-good clichés. “What doesn’t kill you makes you stronger.” “Everything happens for a reason.” “Chin up.” Those don’t help." The last thing I want to hear, especially when I am in horrendous pain and have already lost much due to illness is "everything happens for a reason." Really? So what is the reason for this? What will I gain from it, besides damaged organs and a lifetime of pain? Instead, Kandel suggests that it is more helpful to "express empathy and availability: “I’m so sorry this happened to you.” “I’m here if you want to talk.” “I’m bringing dinner.” 

7. No unsolicited advice please. I find unsolicited advice repulsive and unwanted, and those who know me well know that I am a zealot about it. The definition of unsolicited advice is "advice that is not asked for." As someone who suffers from autoimmune disorders, I am often a target of unwanted advice from people who know nothing about lupus and think that it can be cured by going on special diets and treating it purely with alternative medicine. These are the people who blame me for getting sick (e.g. it's my fault I have lupus because I drink one small bottle of diet cola a week) and advise me to restrict my diet so much that it takes my enjoyment of life, to 'cure' it. Kandel quotes Pogebrin as explaining that "Advice...can be dangerous, unsolicited advice infuriating.” So please do not offer me any. 

Last year, I wrote that life "with chronic illness is an unrelenting round of flares, medications and medical appointments with all its physical, social and emotional impacts on your life. The last thing I want to hear is 'Hey, I've heard that drinking this herbal tea can cure you. You don't need those evil medicines.' It belittles my suffering and imparts blame; that it is my fault that I am sick; that I choose to take toxic medicines (which keep me alive incidentally) and live with excrutiating pain and organ damage. But as much as I hate my situation, I am happy to be alive and though I hate taking toxic meds, I would much rather be alive. I accept my situation and I cannot change it. While changing my lifestyle may help me out, it will not cure my illness. 

Whatever the motive, I do not want unsolicited advice. If I want advice, I will ask for it.

8. Understand when we can't go out. I could not put this point any better than the blogger Diane Vancura, who wrote, "Right now I'm a pretty crappy friend, aunt, sister, daughter, girlfriend, etc. I know this, and I hate it. I've missed birthday parties, graduation celebrations, picnics, vacations and more. And I know it makes people upset. But I already feel like a crappy person for telling people I can't make it to their events. It makes me feel a million times worse when they beg me to give it a try. Please don't try to guilt trip your friends into going to something when their sick. The few times I've allowed people to do this, I've ended up either puking in the bathroom or begging someone to take me home. I know my body. I know my limits. If I'm bailing on an important event, then it means I can't handle it. Please respect that."

9. Be a good listener. By being a good listener, you are learning to understand your friend, and in turn, your friend feels understood. Being a good listener shows them that you care. When you visit your sick friend/relative, please give them space to talk about whatever they like. Do not try to steer the topic away from his or her illness; if she or he wants to talk about, listen. You are their friend/relative, they trust you and like the old cliche goes, it's better than bottling it all up. Here is some useful advice from Sha’Arey Ha Yam (please see end note 5), who represent the sick members of their community in their local hospital:

"Listening skills communicate empathy and understanding and can help facilitate a conversation.

Your posture conveys interest

1. Maintain good eye-contact, sit at eye level if possible.
2. Use non-verbal encouragement such as nodding one’s head or "uh huh…"
3. Lean forward slightly, and relax.
4. Avoid fidgeting, or making impatient gestures like watching the clock.


Listening


1. Remain neutral and non-judgmental, with an open heart. This way you are more likely to really hear what the person is trying to convey. You can help them to put these feelings into words.
2. Reflect what you hear expressed, not how you would react. Listen between the lines to what emotion or feeling is being voiced. For example: "That sounds very hard," "You are very concerned about what you are going to hear."
3. Become comfortable with silence. Allow the person time to think and react. This will also convey an acceptance of what is being communicated without judgment.
4. Above all, compassionate listening is being interested in what the person is sharing and being sensitive to take your cue from them. Follow their lead. Talking about the latest movie you saw or the recent surgery could be equally appreciated. 


Keeping it real


1. Never say "I know how you feel." Everyone experiences pain differently; even people who suffer the same ailments perceive it differently. You can say "It’s sounds like you think (feel) it’s pretty bad (sad/mad/glad). I’m here and I’m listening."
2. Use open-ended questions to keep up the conversation. These begin with "How… What… Could you tell me more about…?" Closed-ended questions that are less likely to elicit conversation begin "Who, When, Where."
3. Try not to mind-read and finish another person’s sentences. When you truly listen actively you may be surprised where the person was going with his/her thought.
4. The visitor should not minimize or laugh off fears expressed by patients, even when they seem exaggerated.
5. Don’t be afraid to clarify or gently explore what you are hearing. When a person is willing, you may ask questions to get to the heart of the matter.


10. Treat me the way you always have. Yes, I am chronically sick and things are different now, but please do not treat me any differently than before. I am still me and my illness will not change that. In her article "Tips for Supporting a Friend Who's Sick" for Psych Central, Margarita Tartakovsky refers to the book "How To Be A Friend to Someone Who Is Sick," by Letty Cottin Pogrebin, which advises: "...treat your friends the same way you always have, but don’t forget their new circumstances. For instance, tease and joke around with them, but “indulge their occasional hissy fits.” Tartakovsky also has the following advice: 

"Talk about other things...Similarly, emphasize their skills and talents, which will help them feel valued...Unless you’ve been there, avoid telling your friend that you understand what they’re going through. Avoid complaining about comparatively small things...Before saying anything, make sure you know the facts of your friend’s sickness and situation."

Please remember that I am not a child, so please do not patronise me. I am an adult and I am capable of having my own thoughts and making my own decisions. Tartakovsky further advises, "Don’t treat your friend like a child or pressure them into being positive. Positive thinking can help people endure tests and treatments, but it’s not a cure. Don’t imply that negative thinking caused or exacerbated their illness. As Pogrebin says, the last thing your friend needs to be doing is blaming themselves." Tartakovsky concludes: "When thinking about how best to approach a sick friend, Pogrebin quotes Hillel’s famous words: “Do not say unto others what you would not have them say unto you. All the rest is commentary.”

Phew, I bet you are relieved that you have made to the end of this post at last! I hope that you have found this post helpful. Do you have any suggestions on this topic that you would like to add? If so, please use the comment box. Thank you for taking the time to read my work.


Notes:

1. Definition of chronic illness:
http://cmcd.sph.umich.edu/what-is-chronic-disease.html

2. Susan Sontag's Illness as Metaphor. For more info, click on the link:
http://www.susansontag.com/SusanSontag/books/illnessAsMetaphor.shtml 
3. For the Living Strong article, please visit: 

http://www.livestrongfitness.com/blog/how-to-talk-to-a-friend-whos-sick/ 

4. Letty Cottin Pogrebin's book "How to Be a Friend to a Friend Who’s Sick" (Public Affairs) and is sold by all major retailers, including Amazon and eBay. 

5. Please note, I do not follow this faith but I find the advice very useful and can be applied to anyone, anywhere, regardless of religion, age, illness etc.

6. The Psych Central Article: 
http://psychcentral.com/blog/archives/2013/04/18/tips-for-supporting-a-friend-whos-sick/ 

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