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To the Patient Just Diagnosed With Chronic Illness

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Dear newly diagnosed patient,

Congratulations! Yeah, I know, offers of congratulations are usually left for happy events. I’m sure you’re probably feeling a lot of emotions right now. And maybe happy isn’t one of them. But, perhaps it is. Maybe, like so many of us, you’ve been looking for answers for months or years. To finally be able to put a name to your illness is often a relief. It’s validation that something really is wrong. It’s hope. Hope that now you can learn more about your condition and even start a treatment regimen.

Maybe you’re scared, overwhelmed and just plain depressed. All of those emotions are OK. Give yourself time to come to terms with what you now know. In time, you will be ready to deal with your diagnosis. Some people jump right into the whole culture of their illness. They read all the books, view all of the message boards, walk for their cause and, yes, they have the t-shirt. Everyone is different though, and there is no right or wrong way to be feeling.

The first step after a diagnosis should be coming away from your doctor’s appointment armed with knowledge. Hopefully, you had someone with you who could be your other set of ears. Someone who could take notes and ask questions. If you didn’t get all of your questions answered, that’s OK. Make a list over several days and call your doctor back with your questions. If your doctor utilizes e-mail that is another great way to stay in touch. You may have questions about medication and other treatments, such as physical and occupational therapy, and you may be wondering about referrals to other specialists. Perhaps you are concerned about your children or wondering if you should even have them. Keep an ongoing list in a place you will remember. Now’s the time to get organized with your medical records. Hopefully your doctor either gave you or will mail you a paper stating your diagnosis. Make several copies of this document to hand out to all of your other doctors and medical professionals you see. You’d be amazed at how, with a diagnosis, you are now taken seriously whereas before you and your symptoms may have been ignored.

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Once you’ve made it home from your appointment, your first step may be to search the internet. That’s not a bad thing; just be sure to research on reputable sites. If your illness has a national organization that would be a great place to start. Also, I recommend getting information from websites like WebMD, Mayo Clinic or the National Institute of Health. Facebook has a lot of patient groups and pages that could be a source of information and support. Check your local hospitals to see if there are any support groups for your illness. You may be one of those people who needs a lot of support – especially in these early days after the diagnosis – and it’s good to get that in a variety of ways.

Telling your friends and family may be difficult for you. Decide who you are going to tell and how much you are going to share. You may share a little at first, then in time open up a bit more. Don’t be surprised by all of the medical “experts” you will suddenly know. People love to give advice; much of it will probably be wrong. Just smile and thank the person and go on your way. Don’t use up your energy reserves to deal with people who may be well-meaning but are totally clueless.

Don’t let your illness become you. You are still you. You still have dreams. Maybe they will have to change a bit, but maybe not. Make time for friends and family, hobbies, work and relaxation. Above all: take care of yourself! Now would be a good time to start eating right. This time, really make a change. If you’re able, find a suitable exercise routine. It may change daily, depending on how you are feeling. But just do something. You will feel better about yourself if you’re doing everything you can to improve your overall health. Don’t forget your mental health; consider talking to a counselor. You have a lot to process and will be dealing with an awful lot as you come to terms with your illness.

Remember, you will be OK. Many others have gone before you and made it through this difficult time. You will too. Hang in there, OK?

Your chronic illness buddy,

Shari

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How I've Developed My Acting Skills Through Battling Illness

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I’ve been dealing with my chronic illness for four years now. In that time I’ve been to countless doctors, been hospitalized six times, had too many tests to remember and gained way too much experience in the inner workings of the medical field. I’ve also learned how to hide my illness like a champ.

I was always good at theater. There are very few things I feel I am actually talented in, but acting is one of those skills. I was cast in several plays in high school and more than once landed the lead role. I don’t say this to brag on myself, but to illustrate that I have become very well-practiced in the art of appearing one way to an audience when I am actually a completely different person.

There are a few people in my life I can be open and honest with but the majority of the people I encounter will receive answers like “I’m doing OK” or “Yes, I’m fine” when they ask about my health. I don’t like to feel like I complain constantly or like I’m nothing more than my illness. I feel that way so much of the time just being in my own head. I don’t enjoy being the sick girl or the one who wears sunglasses way too much or the girl who has to leave early from social outings or has to miss them completely. If I have made it out of my house, I want to live as “normally” as I can.

When I am able to join the rest of society I usually will put on at least some makeup and make my hair presentable so as not to scare small children when I’m in public. I can wake up looking like something from a horror movie and with some eyeliner and concealer, hairspray and a flat iron, I can look like your average 23-year-old. This does not mean I feel well. I can feel like I want to crawl in a hole and die there but you’ll never know it. I can plaster on a smile and choke back the tears (and often the vomit as well) and fight through the day and you will never see a bit of it. I’ve been practicing the role of “healthy” for years. I know the lines by heart.

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15965877_10155008925897728_4137827296770686003_n I took this photo on the way to my cousin’s wedding. I had flown with my family from Indiana to Texas and ridden the few hours from the airport to the town the wedding was held in. I was really excited for him and his lovely bride and was happy to be there, but roughly one hour before I snapped this selfie, I was lying in bed with tears in my eyes wondering how I was going to survive getting dressed, let alone a ceremony and reception. I wondered if anyone would notice if I wasn’t there. I desperately wanted to enjoy the day but the pain was like a demon with a vice grip on me and I couldn’t shake it.

I left the reception early but I at least got to be there and show my support for the newlyweds. That evening I collapsed on the bathroom floor trying to get to the shower and just had to lay there and cry for a while before falling asleep with the water running next to me. I quite literally could not stand anymore. My body had hit its limit and then been pushed beyond. But none of that is visible in this picture. If you asked anyone at that wedding, they would likely say I was my normal, happy self, and thanks to some lipstick and a snazzy dress, I definitely portrayed that character well. Acting has always been a strong suit of mine and being chronically ill has given me more practice than I ever wanted.

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When Medical Setbacks Change the Face of Your Illness

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The thing about living with chronic illnesses is they are never static. Every day symptoms wax and wane. Some days are better than others, but the symptoms are always present. However, sometimes changes happen when you just know that it is a stage of evolution in your illness that will change how you manage each day for good. How do you handle disease progression, knowing that from this day forward things will likely not be the same again?

For me, it seems like every time I have a significant medical event, flare, or emergency my symptoms progress with more permanency. My most recent hospitalization has left me feeling as if this again is a sign of disease progression from which my strength will not fully rebound. The fatigue, weakness, and pain have increased; and although some days are still better than others, my best days are still worse than ever before. I have lived with this illness for long enough to know that this is another turning point in my life.

How does one cope with the knowledge that you are living with a chronic, progressive illness that will continue to require alterations in how you manage life? How does one move past the pain of losing more and more control over your body? How does one manage the fear of losing more independence and requiring increased help from others? These are things that healthy people can never fully understand.

Illness progression can evoke feelings of loss, anger, hopelessness, and fear. It causes feelings of uncertainty about how you will continue on with your life. What does my future hold? What will my level of functioning be in a year, five years, and 10 years down the road? If those of us living with chronic, progressive illnesses focus on our uncertain future we miss out on our life in the present. It can result in depression, isolation, and loss of hope. We must remind ourselves that we have a choice to make. We can give up, or we can choose to accept our limitations and focus on the abilities we still have.

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I still get angry at times when I cannot participate in activities I once used to enjoy. I have moments of weakness, fear of what my future holds, and thoughts evoking depression over the pain and losses I’ve endured. We all experience these feelings from time to time when living with chronic illness. It is in these moments when we are most vulnerable, and in need of the most support. I’m happy to say that regardless of my setbacks, I will still persevere. I don’t know what my medical future will look like, but with the support of my family and friends I will continue to live, love, and look to the future with strength to carry on.

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Inside the Mind of a Chronically Ill Person Debating If They Should Post on Facebook

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Nobody is “normal.”

Everyone is unique.

That said, long-term illness can change a person; it can change your mind, your emotions, your perspective, your way of thinking… (to say nothing of your body).

And the places in your mind that change can be impossible to perceive; what is caused by the physical (hey come on, literal viruses and bacteria in our brains) or the changes that come from long-term isolation, suffering, frustration, loneliness, abandonment, hopelessness…. (trust me, even with the deepest introspection, lines are blurry).

So when you are in this bubble of misery and feeling desperate, many of us reach that crossroad decision of whether to reach out publicly or not. Now, some do so all the time and some seldom do so. I want to share with you, the healthy person, the “normal” person, what may be going on in our heads and where the need to reach out comes from. Because to you, (sometimes frequent) posts regarding how someone is feeling physically and mentally can come off as:

  • Desperate
  • Attention-getting
  • Overly dramatic
  • Whiny
  • Ungrateful
  • Lacking faith
  • Hypochondriac
  • Lacking strength
  • Emotionally unstable
  • Or “_____” fill in the blank

And honestly maybe some people with chronic illness are. But I am asking you to consider grace, and here is why:

Imagine you are living a fairly normal active life; you work, you socialize with friends a few times a week, maybe you are also busy with kids. You do stuff! You go out to movies, you eat out at restaurants, you meet friends for coffee, you have a lot of human interaction at work, you sometimes take day trips or mini vacations, and your life may not be perfect or exciting, but it is full.

One day your body starts to betray you. Suddenly all the daily things that were no big deal become as hard as lifting heavy boulders. Your entire body is tired, tired to the point it feels like you have lead in your veins. You swear Earth’s gravity just dialed it up a notch as you struggle to go up the same staircase you have been bounding up the last five years.

You start sleeping a lot more, so much more that you start to feel guilt over your “laziness.” Even after a full night’s sleep your body starts to shut down in the middle of the day and you need to nap. The thing is all this extra sleep doesn’t help and you are just as tired and fatigued when you wake up in the morning as the night before. Even worse, you feel hungover, even without alcohol: toxic, heavy, foggy, headache, basically like sludge.

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So of course you pump yourself full of caffeine because you have a life and things to do… only the caffeine is a quick fix that doesn’t last, so you have more. After a few cycles of this you start to blow out your adrenals, and things get worse…. You start to feel like you are letting the people in your life down as you can’t be there for them in the capacity you were only a short while ago. Oh, and did I mention the pain? You are dealing with pain that has no business in your body at your age! You feel old and achy. Joints and tendons, muscles and tissues that you never even “felt” at all before, are making their presence known by infusing non-stop pain.

Along with all of this (and a myriad of other symptoms I could mention) is the fact that your mind and your thinking are as foggy as your body. You know that feeling when it’s past your bedtime and you feel your brain trying to shut down for the night? How everything becomes difficult if you are fighting sleep? Trying to just finish that chapter, watch the last 10 minutes of that movie as your brain wants to sleep… Now it feels like that all the time, all hours of the day as your brain is constantly trying to go down as you are trying to get it to go up. Every waking moment is a battle.

Normal conversations become difficult because it feels like you are fighting through fog to both process what you are hearing while trying to formulate the appropriate response. You never knew until now that it actually takes energy to communicate and be with people. You frustrate yourself as word recollection fails you and you can’t seem to formulate articulate conversation.

As time goes on all this takes a toll and you start saying no to things. The energy it takes even to get ready, drive places, prepare for things… becomes too much, and you start having to pick and choose what you are able to do in a day, or even in a week or month as things get worse.

You start realizing that every activity also requires recovery time, and one afternoon out may mean you need two days in bed afterward.

Your world grows smaller.

As time goes on mentally and emotionally you for through all kinds of cycles that can be up and down and all around. These can swing extremely even over the course of one day from crying to anger to apathy.

At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the same problem!” you have read every article ever sent to you on any condition that even sounds similar, you have done crazy alternative things you would never have thought you would ever try…
But slowly friends start to drop away, check in less and less, and stop inviting you to things because they know you will just say “no.”

Life moves on without you and as the years go by your world gets smaller and smaller and smaller until you find you are alone most of the time.

You probably at this point have little to no money because it’s been spent trying to figure out what’s wrong with you and/or trying to get better. You also probably either can only work very little or not at all, and if you can work it drains you so much you have nothing left for any semblance of a life.

Remember when I mentioned the muddled place of your mind and your emotions caused by both the physical and psychological? This is where you are now. You may feel desperate and sad and lonely. Since you don’t see people in person so much anymore you might reach out to your friends online; both your real-world friends and your friends who you met in chronic illness forums and such.

So I am speaking to you, “normal” person, who I love and admire. When you see this chronically ill person prolifically posting, “wanting attention,” talking about what they are going through very publicly, and (sometimes) going into TMI territory… know that this did not happen overnight. This is the same person you know and love and they are beyond desperate to be the person they once were.

They may post because:

  • They want fellowship,
  • They want friendship,
  • They want to both hear and be heard,
  • They need a sounding block,
  • They want to feel normal,
  • They don’t want to disappear and be forgotten,
  • They want to have a glimpse of normalcy and online may be all they have,
  • They don’t see people much face-to-face so “Face”-book is their life.

Hear me now as I write this for my sick brothers and sisters: Everyone needs people! When you are sick and isolated, online is your people!

I don’t believe we are grand-standers or attention getters (at least not most of us). I think we are people just like you whose lives have changed and been shaped by illness and circumstances. All we want is to be normal and healthy. We may covet the little things that most people take for granted, even just taking a walk on a sunny day.

One more thing I want you to know: Worry about the chronically ill people who don’t post and instead stay quiet. They may be experiencing everything the communicators are but internalizing their pain versus reaching out.

It’s about having an outlet, versus internalizing everything. Isolation, versus reaching out. Honesty, versus putting on a happy face. I have seen too many of the “quiet one’s” obituaries online. Please also know the anxiety a person may go through on what to post and what not to post. It is so hard to judge because (especially) on a bad day, perspectives may be askew… and the reactions from people can also vary greatly.

You get the positive feedback from the chronic illness community: “Thank you so much for sharing, I am not alone.” “So glad to hear another person’s perspective.” “Thank you for being honest and blazing a trail for others that will come behind you.” This community supports you and your difficulties as you support them. And this is a safe and honest place to be raw and real in your times of pain.

But, you also may get the negative reactions of people who think you’re a drama queen, or are sick of hearing about your pain, or… (see list at beginning of post). So you may get the negative feedback, or the stony silence of family members, or the snubs and shuns of people who used to support you.

In closing: why am I posting this? I will tell you it’s not for attention or sympathy. I want to give a voice to the silent struggling ones. I want to advocate for those whose families don’t believe them. I want to open a window into a world (I hope and pray) you will never experience so that you can have a better understanding of your sick friend or family member. So consider grace and understanding first when encountering someone who has been struggling for a long time. We have so much to learn from each other.

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10 Quotes That Give Me Strength as a Person With a Chronic Illness

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Throughout my battle with chronic illness, I have often found comfort, hope and strength in literature. These words have carried me through the darkest of times, and I feel that most people will be able to find strength in them, too. May they bless you as they have blessed me.

1. “Some women are lost in the fire. Some women are built from it.”

— Michelle K.

2. “The biggest lesson I’ve learned is: It’s OK. It’s OK for me to be kind to myself. It’s OK to be wrong. It’s OK to get mad. It’s OK to be flawed. It’s OK to be happy. It’s OK to move on.”

— Hayley Williams

3. “Being brave doesn’t mean you aren’t scared. Being brave means you are scared, really scared, badly scared, and you do the right thing anyway.”

— Neil Gaiman

4. “You will be too much for some people. Those aren’t your people.”

— Karen Salmansohn

5. “Scars are souvenirs you never lose.”

— Goo Goo Dolls

6. “It’s a beautiful thing to have lungs that allow you to breathe air and legs that allow you to climb mountains, and it’s a shame that sometimes we don’t realize that that’s enough.”

7. “We are all dying, one breath at a time. Health will fade, bones will become brittle, and none of it will matter in the slightest. No stars burn for the same amount of time, but each is still uniquely beautiful. Nothing in this life is going to stop someone from loving you for your fire. You’re a different star, born to shine unlike the rest, but don’t for a second think it makes you any less beautiful.”

— William C. Hannan

8. “At the end of the day, we can endure much more than we think we can.”

— Frida Kahlo

9. “Whatever you are physically — male or female, strong or weak, ill or healthy — all those things matter less than what your heart contains. If you have the soul of a warrior, you are a warrior. All those other things, they are the glass that contains the lamp, but you are the light inside.”

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— Cassandra Clare

10. “I told her once I wasn’t good at anything. She told me survival is a talent.”

— Susanna Kaysen

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To Spoonies in America on the Eve of Trump's Inauguration

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Dear Spoonie Heroes,

These are scary times. We don’t know what’s going to happen to the Affordable Care Act or other government programs we rely on and care about. You have a right to be worried – for yourself, for your neighbors, for the country. But, I urge you, don’t let that worry get the best of you. It will make you sicker. And no one understands that better than you.

Never has there been a more important time for us to practice self-love and take the best care of ourselves that we possibly can. From a fuller well, we can better support ourselves, our spoonie tribe, and the other people we love. Tensions are high, people are freaked out. I’m sure you’ve seen it on your social media feeds and felt it out in the world, if you get to leave the house. We are more sensitive and we need to do all that we possibly can not to absorb the stress of others. Drink tea. Meditate. Say your mantras. Breathe. Breathe. Breathe. And then breathe some more. In doing this, we can be examples for our friends and family who may not be as skilled in the art of self-care and stress mitigation as we are. Let’s face it, we’re the experts.

If you’re anything like me, your chronic health challenge has taught you a thing or two about what’s most important in life. Maybe you care less than you used to, or none at all, about other people’s opinions. This is because you know that caring about that is a waste of your precious energy. Let us demonstrate our knowing by taking action – personal, political, community, whatever is accessible. We are powerful. Now, more than ever, we must stand firm in that power and share it with the world.

Keep healing like a boss.

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