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The Most Important Thing Doctors Fail to Tell You About Having a Chronic Condition

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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.

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To My Body in Pain After My First Days in College

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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. 

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If You're Struggling to Admit You Have a Chronic Disease

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When I was first diagnosed with a chronic illness, I made this assumption that chronically ill people have support systems. I thought chronically ill people have others to contact when the night swallows their hope for the next day. I thought chronically ill people attend support groups to help lessen the shock, unfamiliarity, and unfairness of their diagnosis. I thought chronically ill people had an extensive list of supporters to root for them, to guide them, and to simply be there.

I am not saying this isn’t true for some, but it most definitely is not true for someone who doesn’t want others to know what the diagnosis is. This isn’t true for someone who feels like the diagnosis has defined their being, their personality and their character. This isn’t true for someone who keeps all troubles and woes to themselves. The truth was that I was all of these attributes in one.

I didn’t want to tell my family, my friends, my co-workers, and my teachers about my illness. I didn’t want to be that girl who couldn’t be counted on because of an illness. I didn’t want to swallow my pride and admit I had something that was foreign not only to me, but to my doctors and medical journals as well. I didn’t want to explain an illness that previous people I told dismissed because it is uncommon and rare. Also, it didn’t help that I was perfectionist either. I would tell myself to keep it together because there are other people who have a more crippling and debilitating diseases and conditions than I do. I was concerned about my physical appearance towards others because I feared if I wore sweatpants to class for a week then I would be considered sloppy, lazy, not put together, and not having high self-esteem and self-worth. I compartmentalized my opinions of my diagnosis and buried them beneath my feet, but I forget to change the window on my eyes when people began to ask what was wrong.

Then I knew things had to change.

First, for myself and all others who are struggling to admit you have a chronic disease, when you cut the noose around your tongue that keeps your disease tame and under wraps, it is one of the most frightening and distancing moments. Your teeth are set on edge just thinking of how to approach the topic, but your heart desires the listening person to understand it, to understand your emotions with the utmost empathy, and to understand that you are not alone in the disease.

Second, if you do have a perfectionist personality and are a people-pleaser for the sake of not wanting to damper the sunshine-filled spirits of others, get over it. The more you keep lying to yourself, the more damage you do to yourself. The more you say it doesn’t bug you not to tell someone how you feel about the whole enchilada of the diagnosis, treatment, or lack of cure, the bug of denial becomes bigger. And the more you let pride cloud your peripheral vision, the chances of noticing people who genuinely care for you becomes a shadow.

Lastly, don’t give two cents about how you look, how you sound when you finally open up about your health, or how you think you’ll only reap the results of the uncharted. Your opinion of yourself is the only one that should be taken into consideration. You think you’ve mastered the art of hiding things that are too big to handle, but you aren’t the author of a “Where’s Waldo?” book. Your emotions are just as transparent on the iris of your eyes as they are in your nonverbal language. You are human. You are worthy of comfort, understanding, and hope. You are worth having others be concerned about your health, and you are definitely worth allowing yourself to share your medical journey with others.

So go ahead, treat yourself to the lasting effects of a genuine and interested friend, family member, coach, or teacher who wants to support you by their sheer will, and not because they’re playing the pity card against you.

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10 Ways to Empower Yourself While in the Hospital

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I have just come out of my third stay in the hospital this summer. It sucked, but there have been many things I’ve picked up along the way that helped empower me during my hospital stays and made them suck a little less.

1. Get friends to bring you food

Hospital food feels far from fresh or nutritious. Ask friends to bring snacks/fruit/etc., and (if you can) full meals from time to time. You may have access to a patient fridge that you can store things in, if needed.

If you can’t eat, request nutrition drinks (I recommend getting the chocolate flavor – the rest are gross!). It’s so important to keep your strength up, even if it’s the last thing you feel like doing.

2. Do your research 

Talk to friends/friends of friends/trusted health professionals about what’s going on. Get a friend to help you research (stick to scientific papers/research-based articles if using Google!), if reading is difficult or you feel overwhelmed by all the information, which often I found I was.

It’s so empowering when you are able to meet the doctor in discussion, rather than feeling lost or helpless.

3. Get a friend or advocate to sit with you during doctor rounds

I could write a whole article just on the power imbalance that often happens within hospitals. I dreaded the doctors round every morning in the hospital. Some doctors were amazing, but sadly I felt patronized and unheard by a lot of them.

It can feel so intimidating having up to five or six doctors around your bed with just you to fight in your corner. So, get a friend to be there with you, and/or ask some of the extra doctors to step out if you need to — explain you feel more comfortable with just one or two there.

Often doctors rounds happen outside of visiting hours, so ask for an approximate time they will visit and plan for a friend to be there. In some hospitals there may also be an advocacy service. If they don’t have this and a friend can’t be there, ask for a nurse to be there during the rounds, instead.

Just the presence of someone there for me helps me feel stronger in my rights and opinions, and improves my ability to voice my needs.

4. Make notes of what the doctors say 

Keep a record of each daily visit and what results they’ve told you, or the tests/services doctors say they’ll do. Get proof of referrals/follow-up appointments they said they’ve made. I was told both referrals and follow-up appointment had been made, but upon discharge from the hospital I discovered they had either been done incorrectly or not at all.

I also generally had a different doctor every day, and they would often say something different than the doctor the previous day. Often suggested tests wouldn’t get done, or results would get confused. Chase things up if they haven’t done what they said they’d do, and don’t be afraid to correct them if they get something wrong.

5. Call the patient complaints line if you need to

In June, while in the hospital, I needed a catheter for the first time because I suddenly couldn’t pee on my own. On the day of discharge, the doctors realized I hadn’t seen a urologist during my stay. This was a mistake — the doctors acknowledged that they thought they had done it. I requested to see one before I was discharged, but they told me to wait six weeks for an outpatient appointment instead, despite the urologist being literally around the corner in the hospital. So, I phoned up the Patients Advocacy and Liaisons Service, and explained my situation. Within half an hour, a urologist came to see me. There may be a similar service at your hospital.

6. Ask for help from friends/family

Tell people what’s happening: people want to help. The hospital was rubbish, but the love and help that came from my friends was amazing. People really showed up, and they couldn’t have done that if I hadn’t communicated what was happening.

If the idea of asking for help makes you squirm, get a friend to set up a WhatsApp/Facebook message group and to pass on messages of what you need, for you.

7. Count the blessings

I usually hate sentences like that, or the suggestion of gratitude practices when things really suck, but while in the hospital, I kept finding my mind drift to the amount of people who loved me and were offering support. It really helped bring perspective and remind me that not everything in my life was rubbish! 

I often felt overwhelmed by everything feeling bad when in the hospital, especially because I was dealing with a seemingly endless and undiagnosable (at that point) health issue, but moments I remembered all the love that was coming into my life from my friends, or the people I knew who I was able to ask for help and support with what was happening in ways doctors were failing to help with, I gained perspective and felt held and loved. 

Gratitude should never be a replacement for feeling frustrated or sad, and I hate when it’s suggested that way, but when it’s felt alongside that frustration and sadness, it can offer perspective within a time that can be overwhelming and hard. 

8. Sleep!

Sleep as much as you can, and get decent earplugs. Hospitals are so noisy, and this generally doesn’t dampen down much at night time. Plus, you are always woken up so freakin’ early…

I made up for any sleep I missed at night by sleeping during the day. We also need to sleep more when we are healing!

9. Take in entertainment and distraction 

Bring your own (or borrow a friend’s) iPod, laptop, phone, magazines, books, coloring books, drawing materials…

Music, films and audiobooks can be healing balms within noisy wards.

10. Get all your test and scan results printed out in detail when you leave

Take them to other health professionals you see, or look at them yourself because they can be a good insight into what is happening in your body and what needs to be looked at in more detail. For example, I’ve found that often the NHS’ “normal” ranges in blood tests are so wide that your results can still be high or low, they just fit within the “normal” range so it doesn’t get flagged.

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To Those Who Stare at Me and Whisper When I Use My Cane

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I hear you. I see you.

I hear you say I do not need this cane I am walking with and give me scornful looks as you walk by, older lady at the movie theater.

I see you mocking me and laughing as I walk by, teenagers at Walmart.

I hear you answer your daughter’s question of why I have this cane with “She’s pretending,” stranger on the street.

I do, in fact, need this cane.

I do not have a disability sticker, and I do not have to use my cane everyday.

But I do need this cane.

I have a condition that is very painful, and gives me grief when I move. It is harsh and some days I cannot even get out of bed. My flare-ups send me reeling.

Other days I have little pain, and I can move around. When I can move I use this cane, to prevent the pain from coming.

I use this pain to give me some freedom. Something many of you take for granted. You walk around freely, with no worries about mobility at all, or with an image in your head about who can or cannot use this device. I am here to tell you to erase that image.

Anyone who needs it, at any age, may use it, I can use it.

Please stop your scorn and mockery.

I see you. I hear you.

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The Strange Dichotomy Between How I Look and What I Feel

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I distinctly remember watching a video my husband taped of me approximately 10 months ago. My mannerisms seemed poised, my speech resonated in an even, pleasant tone, my thoughts appeared collected. But how could this be? I thought to myself, how in the world do I look like this when I feel like junk? Why is it not registering on film how difficult it is to formulate my thoughts and project them with a verbal command? That’s when I realized why people couldn’t understand me. I wouldn’t be able to comprehend me, either. There has always been that strange dichotomy between how I look and what I feel.

My husband has lamented over this contrast in reality and perception. He’s seen my seemingly normal body drop to the ground to a thudding collapse. He’s seen the contorted look on my face when pain zings through my body. He’s seen how tiring it is for me to simply make a meal on some days, and how I accidentally slice into my flesh when my motor skills fail me. He’s seen the days where my body felt a decrepit 100 years old, too stiff to move, too sore to propel my body into an active position. Those were the days he had to carry me to the dining room to eat.

He’s seen the apologetic look on my face as I’m forced to leave church service because of the frightening array of toxins that causes my airway passage to close. He’s seen me press on, fighting to do tasks of normalcy like washing the dishes when energy reserves were tanked. He’s seen the impending results of expending energy, finding me on the couch with whimpers of pain.

He’s seen the moments where I’ve struggled to read (my favorite pastime) as I finally placed the book down from a dizzying vertigo reaction. He’s seen the times where I’ve tried to pen a sentence, but the words couldn’t come. They were silenced by a malfunction in my brain. He’s seen the moments where I have pleaded with him to pray, still believing God’s strength was perfected in my weakness.

He hears the lines that most will say: “I don’t understand what the problem is; she looks fine.”

He responds with a terse reply of, “You don’t understand. She takes pain pills and wears a mask with you. She doesn’t fake her pain with me. When she’s really faking is with you. After she’s done exerting energy she doesn’t have with people, she collapses on the couch, paying for the price of expending energy she doesn’t have.”

I don’t write any word of this post for sympathy, dear heart. I’m naturally more private, reserving these thoughts to a journal stowed away on a dusty bookshelf. I’m sharing these words for several reasons:

1. To provide solace to those facing health issues that others don’t understand because of the strange dichotomy between how you look and what you feel.

2. To provide comfort for caregivers who feel alone in their thoughts.

3. Lastly, this is for those who are perplexed by people who seem fine but say they aren’t. This is in no way a judgment towards you, my dear heart.

Just as I was confused by my own appearance on video, I understand how it seems odd to see an individual who, by appearances, could only depict a picture of health.

I hope you have a small snapshot into life inside a home and outside a home with a person who struggles with chronic health issues and the strange dichotomy that may exist between how they look and what they feel.

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