Doctor holding silver pen, writing on a clipboard

My name is Ken, and I have been diagnosed with bronchiectasis after years of chest problems. Ever since I was a child, I struggled with chest problems, including whooping cough and measles, etc. From then on I had more chest infections and other related problems, and at one stage, I had what they thought was industrial asthma. This was caused by working in a lot of industrial areas during my working life, using materials from asbestos and other products which are now classed as carcinogenic.

In the 1980s, things got so bad that I went from one chest infection to another, but nothing was done about it. Then in 2001, I was admitted to the hospital with pneumonia. Nothing concrete came out of this, but it later came out that this hospital was closed down a few months after I had been in, because it was well below standard in more ways than one. Eventually in 2003, I had to retire early due to another illness, and then my wife and I moved back to my family home in the northeast, and I got more chest infections every year. They got worse each winter.

One year I saw a nurse practitioner who thought I had bronchiectasis but was unable to do anything without a doctor’s permission. Around two years later and after being on antibiotics for nearly four months, I told a family doctor that I had really had enough of taking medication that did not seem to clear a chest infection for very long. The doctor said he would then refer me to a chest clinic, as something was clearly wrong. I was then referred to see a chest consultant after chest X-rays showed I had COPD, along with a cracked rib, which could have been caused by coughing so much. I was then diagnosed as having bronchiectasis, but I was not given any information about it, apart from being told that my doctor could keep an eye on me. We then got a new family doctor and were amazed to find that he had spent time going back through my notes and found that all of the sputum tests had come back with the same results over the last eight years at least. This was the Haemophilus influenzae bug. So he said it had to be deep rooted in my lungs and I may never get rid of it.

I confess that the color of the rubbish coughed up is distressing on a morning, but we now have a nebulizer at home that helps remove some of this stuff each morning. It’s now down to me trying to keep on top of this with antibiotics and the nebulizer, coupled with walking in the fresh air each day. Walking on hilly streets can be hard, but if it all helps, then it’s worth it in the long run. I also now see a pulmonary nurse every few months, and she is monitoring me. I got a new smart phone last year and found some applications that monitor the air wherever I am, and this helps me steer clear of pollution, etc. So in many ways, I have now got myself set up and just have to keep myself going, and keeping as fit as I can, because it helps me.

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Some people think that being chronically ill is a learning experience. I don’t always think that is true. Sometimes being sick really sucks and there’s no silver lining to it, at least for me. However, I will say that I’ve gleaned at least one valuable lesson thus far: My health problems have made me far more mindful of how I interact with others and made me far less likely to offer unsolicited advice.

As I’ve gone along, I’ve developed far more discernment about the unsolicited medical advice I receive and the intentions of the people who offer it. A few individuals actually do have purely altruistic motives. They really think their suggestions will help you in some way, even if they don’t have a clue about your illness, treatment or life. As they say, the road to Hell is paved with good intentions. The concept of chronic illness that has no decent treatment options, much less a cure, flummoxes many people. If you have several chronic illness, it short-circuits their thought processes even more. It can take a long time to get these friends and loved ones to understand that some things just cannot be fixed.

In rare instances, friends offer medical advice because they honestly believe you’re in real danger. And sometimes, when they’re coming from an informed perspective, they’re on point. A number of years ago, for instance, I was bitten by a bat. The first doctor I saw shrugged it off and told me I didn’t need rabies post-exposure prophylaxis (PEP). I was willing to go along with that, because I really didn’t want to deal with a series of injections. A friend who had experience with veterinary medicine was very concerned and sent me some information from the World Health Organization. She let me know that a bat bite was considered a Category III exposure for rabies risk — the most severe — and urged me to at least call the Department of Health for a second opinion. She was absolutely, 100 percent right. The Department of Health immediately set up an appointment for me to file a report on the bat and start PEP. In this case, my friend’s insistence on that second opinion may have saved my life.

Unfortunately, there are also many people who don’t have a clue, much less my best interests in mind, when they offer advice. The din has been loud enough at times to make me want to cover my ears and scream at everyone to go away and leave me alone. At the bottom of the barrel: those who “helpfully” offer to sell me their expensive multi-level-marketing “miracle cure” supplements. There are those who think I am clueless and need their lectures and instructions, and those who want to convert me to their belief system. For some people I think there’s a need to control. There are people who have told me I can “choose” to be well or wish away my illness. There are other people who believe their special diets will cure whatever ails me. This unhelpful unsolicited advice comes from friends, family, random acquaintances, and, often, total strangers.

At the other end of the gauntlet, however, I have discovered treasured loved ones who listen without prejudice and are simply there. They understand why all the “helpful advice” is wearing me out. One friend and I even came up with a slogan: “If the sentence begins with “You should,” you shouldn’t say it.” If something is of grave importance, or if I ask them directly for advice, they’ll offer it. However, they are not going to try to direct my treatment. And I love them for that.

I’ve also become more aware of unsolicited advice when it crops up elsewhere. And it does. I’ve seen individuals online who have had their diagnoses questioned by random strangers. I’ve read comments on news articles from people suggesting treatments for celebrities they’ve never met. My heart ached for a mother who posted that her child was happy being bald, only to get comments from people advertising their MLM hair growth remedies. The endless parade of “you should” and “try this” and “why don’t you” is disheartening.

I can’t change what others say, and trying to do so is a losing battle. As long as I’m ill and alive, I am sure there will be unhelpful and uninvited advice lobbed in my direction. I’d wager that even after I’m dead, some people will still have something to say about my treatment protocols and decisions.

I have, however, changed how I react to it. At this point, if it’s not coming from friends, I’ll either completely ignore it or say straight out that I am not interested in unsolicited advice. If it’s from someone I know, I’ll say, “Thank you for the suggestion” and change the subject. I have neither the energy nor desire to debate it with them.

And I’ve made a concerted effort over the past few years to change how I interact with others. I’d like to say that I’ve never in my life given unsolicited medical advice to anyone, but I’d be lying. Like many other people, I’ve had the urge to fix and to cure. I’m almost 100 percent sure that at some point I’ve frustrated others with unsolicited medical opinions, the same way I’ve been frustrated. Sometimes what goes around comes around, as they say.

While I am not religious in any way, the Golden Rule — treat others as you would want to be treated — rings true for me. This means that I have stopped giving unsolicited medical advice and suggestions and have made a decision to be more mindful about what I do say.

If someone’s actually asked for advice, I’ll give factual information and resources to the best of my ability. If not, if someone’s discussing a medical issue or medication I know about, I’ll mention that and let them know that I’m there if they need to vent, ask questions or compare notes. Sometimes people respond to those cues and want to talk; sometimes they don’t. If I am asked, I never tell people what they should do; I simply tell them what I did and how it turned out. After all, the fact that we have the same illness doesn’t mean we will have the same experiences.

As Mad-Eye Moody would say, this requires constant vigilance. Every now and then I find myself on the verge of offering treatment advice to a friend when none has been requested. And I catch myself, backspace until the comment box is just a blank white square, or take a deep breath and think of something else to say. Support them. Have empathy. Don’t try to fix them.

I’ve picked up some great responses from what my friends have said to me:

“Hell, that really sucks.”

”That must be really rough.”

”Here’s an anecdote…”

“If you need (specific help) please let me know.”

”I’m here if you need to talk.”

”Oh, for f*ck’s sake.”

“I had that. If you have any questions about it or want to compare notes, I’m always available to chat.”

”Sending you strength today.”

“I love you.”

My chronic illnesses have taken so much from me. However, in this respect, they’ve given me more awareness and have made me a better person and friend.

Reaching acceptance of a new normal is often the most difficult hurdle to clear when coping with chronic illness. This is not surprising when one of the most frequently overlooked struggles we spoonies face, and what our doctors most often fail to tell us, is that we may experience a period of grief.

Yes — I said grief, the same grief that occurs with the loss of a loved one. There is a reason for this: Quite simply, you have lost a loved one — you have lost you!

You have lost the person you used to be and therefore may feel you have lost your sense of identity. You may have lost your social structure due to the inability to keep up with the activities of your church, your job, and even your circle of friends. You may need to change your living situation if you can no longer work resulting in a loss of the comforts of home. You may even lose the support of relationships you depend on if those individuals fail to recognize your chronic condition.

The result of these escalating losses, if not addressed and managed alongside the medical treatment of your chronic condition, can lead to additional complications such as depression, anxiety and maladaptive coping mechanisms. This, in turn can result in increased pain, further loss of motivation, increased fatigue and additional changes in sleeping or eating patterns all of which make managing your chronic illness even more difficult. The result becomes a self-reinforcing, vicious cycle of intensifying symptoms and negative emotions.

But you are not told about this in the doctor’s office. You are not told that you should expect to feel the disbelief, denial, anger, guilt and overwhelming sadness of grief. You are not told that these emotions are normal. You are not told that you need to work through these emotions or how to handle the perfect storm of emotion that inevitably will affect your symptoms.

The scary truth is that after receiving a diagnosis you may experience the emotions of grief over several weeks, months, or even years. You will likely move between the varied emotions — or stages — of grief resulting in periods where you accept your illness, other periods where you rage against it, and even others where you are stuck in a fog of despair.

The even scarier truth — this, too, is all normal.                                                                                     

The undeniable fact is that you must grieve for the person you were so that you can move on and accept the person you are.

This process may feel like yet another battle you must wage, but it is a battle you can win. More importantly, it is not a battle that you have to wage alone, either. Grief counselors can be very effective in assisting us through the process of grief. Having an open and honest dialogue with your doctor about your emotions and the grief you are experiencing can open the door to treatment options that may have otherwise remained closed. Online and local support groups can offer the emotional encouragement that may be lacking.

It will take time, but like all grief, the days will eventually brighten, and the fog will eventually lift.  What is important to remember is that, even though you were not told this ugly truth, what you are going through is normal, and you can work through it.

As I sit watching the amazing athletes in the 2016 Paralympic Games in Rio, I’m reminded yet again of how inspirational we people with disabilities can be. Each and every one of these athletes are inspirational, and should be an inspiration to the many young athletes today who seek to one day claim their spot in the Paralympics. It is inspiring to me to see the kids I once played with and helped coach now grown and playing in the biggest game of their lives, the Paralympic gold medal wheelchair basketball game, and winning! I never thought I would be able to watch such awesome cohesion in a team.

I am also aware of another inspirational trait that was apparent throughout all the teams in the Paralympic games — the incredible sportsmanship they displayed. In these often troubled times of conflict throughout the world, it is inspiring to see these players showing encouragement toward their opponents. It is ever-important for us to support one another regardless of what team we play on, because in the end we are all on the same team, trying to improve awareness and support for individuals with disabilities.

All of these are good reasons to be inspired by the athletes in the 2016 Paralympic Games. But unfortunately, they are sometimes seen as inspiring to the able-bodied community for the wrong reasons. In our society, disabilities are seen as a thing to be feared. Individuals with disabilities are often viewed as lesser beings, incapable of accomplishing the same level of success as an able-bodied individual. Because of this, the Paralympics is less televised than the Olympic Games, and fewer people attend. The athletes do not receive the same kind of recognition from society as their able-bodied counterparts, and their accomplishments are often times seen as “amazing… for someone with a disability.” They are inspired not by the athleticism of these fine individuals, or their hard work and dedication to their sports, but by the fact that they are disabled and yet still manage to play a game that nobody would ever think they could do, and isn’t that just nice… (sarcasm sign here.) In many cases, individuals in our society are viewed as “inspiring” for performing menial tasks just because they have a disability.

The able-bodied world needs to understand that people with disabilities are not inspiring just for doing everyday activities. When I go to the grocery store in my wheelchair to get more sugar, I am not inspiring; I am just shopping like everyone else. When a child with an amputated leg walks on a prosthetic, he is not inspiring; he is just walking like everyone else. When a woman who is blind goes to the library to check out a book in Braille, she is not inspiring; she is just getting a book to read like everyone else. When a young man with cerebral palsy graduates from college, he is not more inspiring than the rest of his accomplished classmates.

Yes, people with disabilities can be inspiring. Steven Hawkins is a genius, and has contributed so much to science and our society. He is inspiring. Matt Scott, an American Paralympic wheelchair basketball player who has two Parapan gold medals, was nominated for the Best Male Athlete with a Disability ESPY Award, starred in a Nike commercial, and just helped his team win gold in the 2016 Paralympics at Rio, is inspiring. Christine Ha was awarded Master Chef in the third season of the hit television show, “Master Chef,” by Chef Gordon Ramsey for being an amazing cook, and she just happens to be blind. She is inspiring. These people are not inspiring because of their disability, they are inspiring because of the unique skills they have developed through hard work, learning, training, and dedication. They just all happen to have disabilities. Let’s stop focusing on the disability and start focusing on the accomplishments these amazing individuals have achieved.

Congratulations to all of the athletes in the Paralympic Games at Rio in 2016. It takes a true athlete to accomplish what you have accomplished, and win or lose, you have done your country proud. You are the best of the best. My deepest condolences to the family, friends and teammates of Iranian cyclist Bahman Golbarnezhad. Our thoughts and prayers go out to you.

I’ve written a few open letters to my body over the years. Today is no exception. Body, I am done. I want to return you. You’re faulty. I’ve been battling you for 16 years since you nearly killed me after fluid entered my heart.

Body, you are relentless. You are manipulative. You are cunning. You are evil. Sometimes I see you as a villain. Not the sexy, Tom Hiddleston-esque ones we see in the movies and TV. You’re more a snake, a viper, a demon hiding in the shadows.

It’s like you’re always five steps ahead of me. Sometimes you give me a break. And it’s in those times that I gain hope, inner strength and independence. I see myself in the future, I aim for the things I want and when I’m but a finger tip away, you rip it away.

This week I started college. My road getting to college was a hard one. My education was ruined by you, body. My mind wanted to learn, but you wouldn’t let me. My mind wanted to be in school every day. My mind wanted to draw, to act, to solve, to write, to care. I had so many passions. I wanted to be so many things. Would you let me? No, you would not.

I had to leave secondary school because of bullying linked to you. When I transferred schools, I was given hope. Then you added other chronic illnesses along the way. You wouldn’t let me sit through my exams. I had to repeat a year — again. And would you let me have another go? No way. I had to leave school without that piece of paper that proved my intelligence I knew I had. I tried and tried and tried, and yet you still stole my hopes and dreams away. But I didn’t give up. Even when my mind was so drained from all of this disappointment, I didn’t give up. I researched, I budgeted, I pleaded and I got into college to do one of my all-time favorite passions: art.

I started on Tuesday, and I’m writing this on Thursday night. What did you do? You destroyed me. Every time I came home from attending college this week, I vomited. Every time I walked just a little, my hip dislocated, even while I was using my trusted cane. After my first proper day of classes yesterday, I came home and sobbed my eyes out. I lied in bed unable to move. I deteriorated so badly to the point where anything touching my skin sent me howling in pain. I had to call my mom to come at 6 a.m. in the morning because of the pain and I couldn’t stop crying.

You did not stop there. Today, you would not let me sleep or rest. I needed assistance getting to the bathroom, getting to my bed and taking my medication. Every joint in my body was on fire and in excruciating pain.

I had to have the heat on full blast with two blankets because I couldn’t regulate my body heat and I was shaking. And then my ulcerative colitis decided to join the party. Bear in mind that it’s hard to control your bowel with this disease. Try doing that when you can’t walk. My mother had to pick me up off the floor from a violent vomiting session where I had been so drained I couldn’t get up.

This happened because of two days of college. Not even two proper days. You are taking away my hope. I was so proud of myself for getting into college and finally show all those abled-bodied people (including family and friends) what I was capable of. They would pester me, just by a lack of knowledge, about my education. They would say things like, “You just need to get out of the house” or “When I was your age, I was doing such and such.” I tried to tell myself that this was all water off a duck’s back, but hearing things like “You’re a failure” and “Maybe it’s all in your head” hurt.

I’m sick of being invisible. I’m sick of you stealing my life away. Don’t do this again. I’ve had enough. I know if you do end up stealing away my college experience that I’ve wanted and waited for that I’ll find something else. I’m resourceful. But surely, the war can be over for just a bit of time.

You stole my childhood, my teen years. Let me be a young person. Let me be 20 and careless and free. Let me be creative. Let me be me. 

I’ve honestly found that one of the hardest parts about chronic illness and disability is how people react. We aren’t “superhuman” – whatever the British Paralympics advert says – nor are we “subhuman,” for the different ways we engage and interact with the world. We are just human. We deserve to be treated properly: not with your pity, but with your respect. I tried to pick out the top 10 things I wish people with ableist views understood about life with a disability, but I’ve definitely missed some – feel free to suggest more in the comments below!

1. Someone using mobility aids or other assistive devices in public does not automatically make them “lesser” than you, or than invisibly disabled people. Nor does it mean you can pity them.

There’s so much stigma attached to using assistive devices in public, and I’ve heard time and time again that someone who needs a wheelchair is reluctant to get one because of how people will judge them. The one I really don’t understand is the judgment that motorized scooters and wheelchairs are “for lazy people,” whereas having a manual wheelchair means you must be “really sick,” and so you therefore become an object of pity. That isn’t true. Whatever assistive device we are using, it is the one best suited to our requirements and means.

2. Someone being “weird” does not mean you get to treat them badly.

Chronic illnesses can make us do some stuff that appears a little odd. Regardless of whether the behavior is involuntary – like muscle spasms or tics – or voluntary – for example, the notable occasion where I couldn’t take standing anymore and so carefully lay myself down on the floor of a shop – we know. We know it’s not “normal.” Staring, whispering, and pointed comments are hurtful. We’re getting by in the best way we can. Don’t tell us to fit in with your parameters of “normality” to make you feel more comfortable.

3. I have limitations. They are not made-up excuses.

If I say I can’t do something, I either mean I physically can’t, or it will cause me pain/ fatigue that I could otherwise avoid. I am not being lazy by saying “no.” When I say something is too much, it’s not OK to push it even a little bit further.

4. Just because I can do something once doesn’t mean I can do it a thousand times, that I’ll be able to do it tomorrow, or that my chronic illness / disability has gone away.

Often we’re struggling with variable or progressive conditions, or have flare-ups of symptoms. What we can do changes hour by hour, day by day. Please don’t hold us to what we were able to do yesterday: it just isn’t realistic. Especially as chronic fatigue tends to factor into things – we could actually still be recovering from whatever it was we did yesterday.

5. Me accepting my limitations doesn’t mean I’m “giving up” or “giving in.”

All it means is that I’m refusing to adhere to society’s rigid beliefs on what I should and shouldn’t be able to do. When I “focus on what I can do” that should mean finding workarounds and things I can do in place of things I can’t do, not ignoring things I can’t do and pretending I’m fine.

6. I am not being selfish by prioritizing my needs over your wants.

This goes beyond chronic illness – selfishness is prioritizing your wants over someone else’s needs. But we often get told we’re being selfish when we assert our needs, especially when they are an “inconvenience” to others. If we say we need something, we need it, and those needs are of prime importance to our well-being and functioning.

7. I am not exaggerating, or making it up.

This often comes up in reference to pain. One time when I tried to articulate my pain to my mother, she just said “maybe you have a low pain tolerance.” If something affects me X much, it is X amount of a problem, regardless of what you think my “pain threshold” or “pain tolerance” should be. If something hurts like a 7/10, it’s a 7/10. In fact, it’s normally the other way around: chronically ill and disabled people tend to minimize their pain. If our symptoms seem unbelievable to you, that might be because you’re unfamiliar with our condition. I assure you, we’re telling the truth.

8. I am not your inspiration porn.

We don’t exist to make you feel better about yourselves. We don’t exist to provide you with motivation. It isn’t automatically “amazing” when we achieve something, nor are we “so brave” just for daring to live in a world that isn’t built to accommodate us. We are human, doing everyday, human things. This kind of “what’s your excuse?” thinking often crops up around the Paralympics. Since there are disabled people who have trained hard to become amazing athletes, other disabled people may be viewed as lazy for not achieving similar things.

9. Comparing your acute problems to my chronic problems is invalidating, tiresome and honestly just a D*** Move™.

No, your experience with tendonitis of the knee three years ago does not give you a window into my experience, where I am in constant knee pain, have chronic tendonitis from limping, and frequent knee subluxations and dislocations. I know you’re trying to empathize with me, and I appreciate your attempt to get some sense of understanding of the pain I’m in. But honestly, it’s not the same.

10. Unsolicited medical advice isn’t helpful.

No amount of sunshine, exercise, kale, yoga, [insert current health fad here] is going to magically restore me to abled status. I don’t care if your aunt’s ex-husband’s second cousin’s friend’s daughter had a similar condition and defeated it with the power of positive thinking and vitamin supplements. I promise you, we do our research – those of us with rare conditions often know more about them than our doctors. We’re often forced into a position where we have to bring up possible solutions, so we know what’s available and likely to work. On a related note, our medications and / or assistive devices aren’t “making it worse.” Medications in particular have their side effects, but they have been prescribed to us for a reason. We know you probably mean well, but pushing various treatments on us can make us feel like we’re not trying hard enough to be better.

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