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When Your Chronic Illness Affects Your Friendships

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To those who are chronically ill, many of you know how it is. You know how it can play out and you most likely know how it feels when chronic illness swoops into your life, unwanted and uninvited like a hurricane full of dread causing you to drown in its darkness. You know that there are often a host of complications when chronic illness invades your life and one of the elements that turns complicated is friendship.

When it comes to the rocky, roller coaster ride when friendship meets the challenges of chronic illness, initially your may friends stay. They are with you, hand in hand and side by side. Some guide you, some support you and some help you with each and every step of your journey. They can be your saviors, your inspiration and your hope throughout these often deep, dark and desperate times.

As time goes by when you remain in a state of sickness, still poorly and no longer the healthy person you used to be, your friends’ patience can wear thin and their wishful thinking for life to resume its expected course may gradually begin to fade away. Some friends start to question: “How long can I wait? How long will it take? When will my sick friend recover or improve at the very least?”

“When?” Is the question on everyone’s lips. They wait as they watch and they wonder as they begin to understand what a friendship with their once healthy, but now sick, friend truly means.

This is when the good old term “chronic” comes in to play – the healthy friends learn that this isn’t a blip, it isn’t a bump in the road, it isn’t a one off. It’s chronic, it’s long-term and it may well be a lifelong thing because the prognosis of chronic illness is often unknown. Being friends with a sick person is sometimes tough; trust me, I get it. I know is isn’t always easy. The cancelled meet-ups, the unanswered phone calls, the missing out on special occasions (too poorly to meet, too poorly to talk) and the perceived lack of effort on the ill person’s behalf are just a few of our many downfalls to say the least.

At some point there comes a time in the friendship when a decision is made – do I leave or do I stay?

Whether it’s at a subconscious level or a conscious decision, the truth is that the some of them choose to leave and then they are gone with the blink of an eye. It’s sad and it’s often brutal, but it’s the truth of what can happen when friendship and chronic illness collide.

To the friends who chose to leave me: I just want to say thank you. Thank you for staying as long as you did, I know it was tough for you too. Also, thank you for allowing me to realize who my truest, my greatest and most dependable friends have turned out to be. I guess I’m trying to say, this cruel twist of fate has allowed me to realize how strong I am and that I couldn’t have done it without you; initially with your support and subsequently with the heartache and the heartbreak.

Now onto the ones who have had blind faith in the friendship, persevered throughout my journey, the ones who have chosen to stay: Tears fall from my eyes as I write this, tears of happiness, tears of gratitude and tears of love for those who chose to stay. You are still here, fighting with me, no matter how long between our reunions or catch-ups (which usually depends on and is based around my ill health). I know my body is different to yours. I know that my body is different from that of your other healthy friends, I know that my body has certain limitations which means that our friendship is different. But you are my friends. You are here for both the good times and the bad – like a marriage for better or for worse, in sickness and in health. What matters the most is that you are still here and you are still with me, hand in hand and side by side so for that, I thank you, I love you and I’m living life on cloud nine that you made the decision to stay, you are still sharing my journey and you continue to be my lifeline.

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Thinkstock Image By: g-stockstudio

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How Battling Chronic Illness Makes Me Feel Like a Superhero

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When I was little, I loved cartoon superheroes. And even as a girl, I had several characters to choose from. But I didn’t imitate any of the standard “good” characters like Wonder Woman, Supergirl or even Batgirl. Nope, not me! I chose a darker, more enigmatic character I read about in the comic books most of our Saturday morning heroes were based off of. I followed the escapades of Black Widow and then reenacted them in my attic, complete with gold-toned bracelets and black boots.

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I’ll admit, part of her appeal was the fact that she was a spy and considered a bad girl, which I definitely was not! The irony that I was morbidly afraid of spiders was not lost on me either. Nor was the fact that even then, I was showing signs of physical weakness. (I just did not know why back then.) So when I couldn’t breathe trying to complete the required mile run at school, I came home and read about Black Widow’s speed in capturing the bad guy of the week. And when I couldn’t climb the rope for the fitness test, I’d pretend I had her special web-slingers and climb to the attic ceiling. (The fact that the ceiling was especially low helped a lot!)

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As I grew, I retained an affinity for “doing good” and working with the disabled (Black Widow frequently partnered with DareDevil who was blind), but my health seemed to take on a life of its own. And like every nerd knows, even good guys go bad sometimes. Remember Spiderman 3? (No, I’m not talking about the dancing.) So now I felt even more like the heroine of my youth. A lot of good mixed with something very bad. Well guess what? I spent my childhood fighting evil in my attic. I was already mentally prepared. After all, isn’t a disease attacking you from the inside the embodiment of an evil arch enemy?

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And this enemy is trying to break me. I feel like someone has stuck kryptonite everywhere. (I know, wrong analogy. Bad nerd!) But seriously, I leave the house in hot weather, I wilt. Touch me during a flare-up and I’ll hit you. (Glad I didn’t pick Wonder Woman now, aren’t ya?) I fall and I break things. (Heck, I broke something bending over once!) Anyone remember Samuel L. Jackson’s character in “Unbreakable?” I own braces for so many different body parts that I rival Iron Man’s armor! (His is much more stylish though.) I’m even weaponized with a cane like DareDevil, but mine can’t do cool stuff. (Note to self, upgrade cane.)

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So here I am, some 40 years after my attic adventures, and 21 years after being diagnosed. I have had many battles over the years. Many, many battles. And I have won a lot of them. But I have also lost some. Such is the life of a closeted superhero. But I still believe in the tenets that superhero lore was built on. The good guy always wins. And maybe that doesn’t mean the whole war for those of us with chronic diseases. Maybe it just means the little battles. Because I know I’m always going to be sick. And I may lose the balance and grace (haha) I used to have, but a bunch of white cells that have clearly lost all sense of what planet they’re on are certainly not going to take away my sense of humor. Or my sense of right and wrong. Or the fact that I snort milk out of my nose if you make me laugh.

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(Shhhh! That’s my real super power!)

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Thinkstock photo via Sergey_Nivens.

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Why It Can Be Hurtful to Tell Someone With Chronic Illness, 'Don't Be So Negative'

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Don’t be so negative” is a sentence many of us hate to hear or read. And sadly many of us hear it a lot, be it from strangers that just learned of our chronic condition or even our loved ones. I’m sure the people saying that sentence don’t know the power behind it. A seemingly innocent remark, pointing out how maybe some of us seem to be “acting negative” rather than being positive.

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I’m here to tell all able-bodied people that you must stop saying that to someone who is struggling with mental or physical health. Every time you say anything along the lines of me being negative, it’s like I’ve been shot. The shock that someone would even say such a thing is usually the first thing that goes through my mind. Let me try and explain.

When you spend every day of your life tackling your chronic pain or mental health issues, it takes a lot of strength and courage to look at the world and simply smile. I spend hours and hours looking in the mirror wondering if there’s any point using the little energy I have to get dressed if I’m only going to curl up on the sofa and writhe in pain anyway. I constantly deal with people getting annoyed at me for cancelling plans due to my pain flaring up. I couldn’t possibly list every little thing I go through in a day, and yet I do my best to smile.

When I focus on the negatives, it’s not me “bringing down the mood” or “not attempting to be happy,” it’s that I spend most of my life in pain, and I get lots of drama for it. So it’s OK for me to be negative. It’s OK for me to hug a pillow and cry about how everything has gone to hell. How I get judged for every move I make, how I have to fight the doctors to justify my medication that keeps my pain at bay.

 

An able-bodied person is allowed to be negative too and have days where they cry and moan, so us chronically unwell people are allowed as well. We fight to be positive, we fight to smile and laugh. Some of us struggle more to do those basic things.

I think the whole idea that having time to be negative is a bad thing should be rethought. People are allowed to have time where they eat ice cream and watch rubbish films and cry into pillows, so why is it I see more people giving chronically and mentally unwell people more trouble for it than anyone else? We have valid reasons to be negative and the fact a lot of people accuse us of not being sick because we seem happy is a ridiculous accusation. We’re accused of being healthy when we try to smile and be happy for everyone, then we’re told we’re too negative when we show what we’re really like when we’re in pain. How is that fair on us? How is that fair on anyone? The word “negative” has become a cruel word for many of us.

I write this to tell you to please stop telling someone who is mentally or chronically unwell to “stop being negative” as it can hurt us a lot. You’re making it more and more difficult for us to be who we want to be. And if that means we’re negative for most days, then so be it. It doesn’t make us bad people, it makes us honest. It makes us show how we’re really feeling. Maybe instead of telling us to stop being negative you ask us if there’s anything you can do to help us. Small gestures to show you support us will do more to make us “positive” than it will just telling us to stop being negative.

There’s a lot of “negative” words in that article – I hope it all makes sense so you can pass it on to those that maybe don’t quite understand that what they’re saying is hurtful.

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The Guilt That Often Accompanies Chronic Illness

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I have recognized the grief attached to chronic illness but have only now realized how much guilt I have too!

I can’t be the grandparent I want to be. I can’t even live in the same state as my grandchildren. I can’t go to school events, grandparent days, football, dancing and cricket games, confirmations and birthday parties. There is guilt too because I believe that being available to do these things and play silly games and read stories and just plain love my grandchildren is what being a grandparent is. I am missing the joy of them growing up.

 

I can’t be the wife I would like to be. Sometimes my communication is almost nonexistent. I get tired of talking about my health. Tired of explanations. Tired of having to rest. Tired of not being able to share our retirement as we had dreamed. I have guilt because the load of cooking and housework falls on his shoulders. He really is my carer now! And as for sex… Well, what’s that? I miss the close intimacy.

I can’t be the friend I used to be. I let my friends down when I have to cancel at the last minute because of my health. They understand, but there is always some guilt jiggling away. Some days, I don’t have the energy to answer their phone calls. Guilt is there as it seems I receive from the friendships but often can’t give!

As a mother, I can’t be there for my three sons. I have moved 1200 km away. I am distanced from their lives and feel guilt at being unable to help and support them or spend time with them.

I loved being part of a faith community and supporting others. I am physically incapable of doing this. A part of me believes I “should” still be active in the community.

I feel guilty that my husband has also had to move 1200 km from home, away from all we knew and loved. He is remarkable! He never complains. I sometimes think I am too big a load! What we have had to do has been a huge upheaval and caused financial difficulty too. He has had to relinquish the dreams we had for our retirement too.

I can look at the beauty of the place where we are living; my husband and I have strong companionship and ties. Physically, I am far healthier living in this climate. I can find lots of enjoyment in my life. I am becoming far more patient. I am not complaining about “the unfairness of my lot in life.” I am not in the midst of a “pity party” either.

I have just discovered and am now willing to acknowledge that there is just this facet of chronic illness I must recognize, accept and work through. Chronic illness brings many things into your life. One of these is often guilt.

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Thinkstock photo via Blackmoon9.

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The Importance of Removing Toxic People From Your Life With Chronic Illness

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Loved ones. We all have someone we care deeply about. However, there are circumstances where love just isn’t enough. You can give and give until you are drained dry like a desert. No moisture left to nurture your own need for self-love hydration.

 

Everyone needs to rid themselves of toxicity. No one, and I mean no one, deserves to settle. If you struggle with chronic illness, however, you literally can’t afford the energy a toxic person or situation requires. We can barely get by as it is on the rough days. Of course, we still can love someone, but if they’re dredging us, it is not necessary to allow it to bleed us dry, ill or not.

At a certain point we must recognize a person needs to have it in them to save themselves. This may sound selfish, but we are not responsible for anyone but ourselves. A toxic person will manipulate you and meld your words into an overflowing volcano of self-doubt and the lava could reduce you to ash. This is when it’s vital to walk – even run – away. No one deserves to feel like ash. No one deserves to be melted into nothingness.

A toxic person is guilty for being toxic, but it’s important to try not to enable or tolerate the behavior either. At some point one must choose their health over trying to preserve someone else’s happiness. The agony over sawing off a toxic person is comparable to the pain I feel in my body each day, only it takes place in my heart because I expressed genuine love. But I also recognize that a ship that’s sunk won’t float again just because I’m trying to keep it sailing.

My sights are always set toward a brighter horizon, and if I can’t stop someone’s ship from sinking, no matter how hard I try, I will still aim for the sun.

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Thinkstock photo via digitalskillet.

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Trying to Get Pregnant While Struggling With Chronic Illness

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Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before going on or off medication.

Is it possible to conceive with a chronic illness?

I will be completely honest with you. This is a very difficult post for me to write, and probably one of the more difficult subjects.

Being chronically ill is hard enough. Trying to battle all the internal feelings of feeling like shit all the time and trying to summon the energy to get out of bed.

 

One of the more upsetting parts of my illness has been the fact that, as of yet, I have not yet been able to conceive. So here is some background on me.

I have been with my partner for around seven and a half years. In those seven and a half years (apart from maybe the first few flushes of young love, when you’re trying to be careful!) we have never used protection.

Of course, when I was younger and deathly afraid of catching anything or getting pregnant, I first started on the contraceptive pill. It was a one a day tablet. I will hold my hands up: I was awful at taking it! I always forgot.

When I hit my mid-teens, around 15, I decided to pack in the pill and was upgraded to one I couldn’t forget. The contraceptive injection!

This, I was told by my doctor, was completely safe and one injection lasted three months. Absolutely smashing, I thought.

If I had known then what would happen to my body after, I would have run out of the clinic as fast as my legs would carry me!

I had my injection (in my bum) and it didn’t hurt. It did completely mess up my periods though.

Like I was told, I didn’t have my period for three months. Woo hoo. It worked. I was supposed to have another injection, but I didn’t have a boyfriend at the time and thought it would be best to let my body recover its natural cycle again. So I stopped.

My period didn’t come in the fourth month. Nor the fifth, nor the sixth. 18 months later I still hadn’t had a period!

I went to the doctors numerous times and told them. I was told I may have had an allergic reaction to the injection and it had prevented my period forming a natural cycle again.

This couldn’t possibly be healthy! Your body is supposed to expel once a month. Mine wasn’t.

Was the contraceptive pill to blame for all my medical issues that followed?

Two years after the Depo-Provera shot, my thyroid broke! Then my gallbladder bailed on me. Then my muscles and legs abandoned ship and I developed fibromyalgia.

Is this a coincidence? I’m starting to think now, after all the research I have done, no, it might not be a coincidence!

So anyway, it’s been roughly seven years of trying and I’ve not even had so much as a scare. No late periods. Nothing. Periods come and go as regular as clockwork.

Even still, I hold on to a tiny bit of hope that it will happen one day. I’ve heard stories that the less you try, the more likely it is to happen. That, however, is a lot easier said than done. You can’t just switch off to it.

I have even heard stories of women who had adopted, and conceived naturally after. They even said this in the Sex and the City movie! Charlotte adopted and then got pregnant.

I even went through a huge period of sex not being fun anymore. It was a chore. Just another thing I had to do. That sounds terrible, and it is, but my head had got into a place of thinking, “The point in having sex is to make babies. I’m not making babies. Ipso facto, what’s the f***ing point.”

Now it’s been so far down the road and my head is slowly coming back round to the idea of having sex to feel close to my partner, or just for fun.

I’ve had some tests and even though I have polycystic ovary syndrome (which can cause fertility issues), I have been told it isn’t “blocking” anything from going where it needs to.

The doctors do this test with an ultraviolet dye which is injected around your tubes. It shows the journey of the sperm and shows if it’s getting stuck anywhere. Mine wasn’t. Which is good news.

As well as PCOS, I have also been diagnosed with pelvic inflammatory disease. I have had this for a very long time. I hardly notice any major issues, except I do struggle with occasional bouts of pain and soreness around my hips.

I have no idea if any of my illnesses are linked to why I struggle getting pregnant, but I’m determined not to feel sorry for myself and get down about it. Nor am I going to let it take over my life, like my illness already has.

If it’s meant to happen, it will.

Or so I keep telling myself.

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