The cold sensation of porcelain greets my lingering nausea. My Saturday mornings are quite similar to many teens and young, college-aged 20-somethings, minus the fond memories of the raging party from the night before. It is during these mornings that I occasionally wish my maladies were caused by an alcohol-induced stupor. These constant, lingering symptoms are not normal for people our age.

If you are like me, you have always been sick. From day one, your DNA held the predisposition to the testament that would be your life as soon as the faulty genes were set into motion. Things were bad when you initially became ill – or at least when symptoms first interfered with day-to-day living.

The beginning symptoms probably came on gradually, yet also so suddenly that you did not realize what was occurring until you were left mouth gaping, staring in utter disbelief at your own body’s betrayal.

Medical portions of your life quickly obscured the non-medical, but you found solace in work, school and active hobbies. You repressed your emotions, not allowing yourself the luxury of feeling scared. You knew you could not possibly remain ill forever. It would go away.

There was never time to think. The appointments were many, the testing intense. Syndrome-this. Disorder-that. The medical jargon compiled in your file started making sense. The doctor prescribed another medication, the next chance for a cure.

It was on another trip to the pharmacy between outings and errands when you reflected on why your old coworker blatantly ignored you after witnessing that bad flare. Symptoms were growing increasingly difficult to hide. You wondered if you were well enough to attend class that day or if school would end up like the job you had to quit. You were angry that your best friends stopped calling to hang out. They could not accept your illness interfering, like all of the other plans.

Later, you unexpectedly faced a decline in your condition. It was a deterioration so severe that your previous health problems seemed minuscule in comparison. The doctor added the last diagnosis to the list while you yearned for the state of health you had prior to your illness progressing. You regret the experiences postponed for “when I get better.” You would happily settle for your old, somewhat functional sick again.

Now, you let yourself go there. You are struggling to adjust to the dizzying world of pain when you only want an average life filled with the usual teenage clichés. You also know that as you approach mid-adulthood, you will want the normal life then too – a completed college degree, stable career, family and maybe children.

That intense need for that normalcy does not dissipate. Eventually though, you become skilled in navigating life with a chronic illness. You forgive past friends for their abandonment and appreciate those who stayed by your side. You find coping methods and a medication or two that make symptoms tolerable. You cherish fun opportunities whenever you can.

teenage girl lying in the grass and laughing

You are doubtlessly scared. And rightfully so. I was as well, and honestly, I still am. Life definitely loses the typical definition of normalcy once chronic illness moseys its way in. However, your feelings are totally normal. The normal in chronic illness is that there is hope in creating and accepting a new “normal” with even more purpose and potential than before.

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There’s a really funny video going around – a parody of the show “House Hunters” that’s called “Church Hunters.” Watch it here. In this video, a couple is trying to find the right church for them, and it parodies modern church, parishoner-centered, experiential-culture.

Now, if you’re someone who is religious and attends church, you probably had a good laugh at this, because you know that there’s so much more to church than this. Church is about way more than what a church has to offer: it’s about what the person who attends church can bring to a church, too. Everyone has their own gifts. When the right church for the right person combine, it’s a beautiful thing, because the person brings their talents and makes the church a better place, and the church makes the person a better person, and I believe together they are truly able to advance the kingdom of God and be the hands and feet of Christ.

But what happens when mental and chronic illness are brought into the body of Christ, which is the church?

I believe wholeheartedly that the church – both the whole, universal church, and individual churches which are all supposed to be little branches of the church universal – are all the body of Christ, and every single member is made in God’s image. That’s right, every single member. Sometimes, all members aren’t treated that way, and it breaks my heart.

I believe if Jesus lived today, he would be appalled by how many churches treat people with mental and chronic illness. They are often rejected, stigmatized, left behind, and ignored. Because of this, many people with chronic and mental illnesses, which are often invisible, hide their illnesses from church communities, which are supposed to be places of love and mutual help and support but in my opinion more often become a place of judgment and dressed-up facades. There are many churches that do strive to do better, though, and I hope everyone with a mental and/or chronic illness finds one.

I haven’t been in the position of trying to find a church family to belong to for a while, and it’s especially complicated for me because I have my master’s degree in divinity and have worked on staff of several different churches. The last few churches I have been at because they’ve hired me. I have learned a lot and benefitted a lot from all these churches, but I never really “church shopped,” or looked for a church that I will attend, not work at, that will not only best fit mine and my family’s needs, but also that I can contribute to and help through my gifts and talents.

Since I have last looked for a church, years ago, I have received several diagnoses that might not define me, but definitely affect how I view the world, and myself. These include bipolar II, Ehlers-Danlos syndrome, PTSD, and mast cell activation syndrome, adding to the Chiari malformation, generalized anxiety disorder and panic disorder I was already diagnosed with. My health has deteriorated, and it affects how I act, including in church. This makes me have several considerations as I consider finding a church that will accept me for who I am and that I can give my gifts and graces.

First of all, is it a church that generally is accepting and understanding of mental health? I know lots of churches that get very squeamish around discussions of mental health. They see anxiety and depression and other illnesses as sins, not disabilities, and they do not take the time to understand them correctly. Is it a church that wants people to sweep their mental illnesses under the rug and be their polished, prim, dressed up “Sunday selves?” Jesus didn’t deal with “Sunday selves.” He dealt with prostitutes and tax collectors; widows and orphans. He loved people the way they were, and called others to do the same.

I want a church where I can be open about my anxiety, panic disorder, and bipolar II, and where other members feel open about theirs, too. I want a church that advocates for inclusion of people with mental illness in their church and other churches and sees them as an essential part of the body of Christ. I can help with this, but I can’t do it on my own. It has to be a whole church effort.

And generally, how is the church with chronic illness? Is it the kind of church that only is comfortable with illnesses that are neatly resolved after two weeks of prayer? This sadly happens more often than you think, and at many churches I’ve seen. These churches preach the power of prayer, and say if you only pray hard enough, you will be healed.

But I don’t believe that my chronic illnesses will likely be healed. They are genetic and lifelong. And while I believe God is a God of miracles, I don’t think curing my Ehlers-Danlos syndrome, Chiari malformation, or mast cell activation syndrome are likely miracles God is going to perform. I will likely have these illnesses for life, so what I want from the body of Christ is prayer for management of symptoms, help when the symptoms flare up badly, and most of all, love and understanding, rather than judgment and bewilderment. I want a church where they help put my daughter’s coat on when I had to sit through all the hymns because my hips hurt too badly to stand, not where they look at me judgmentally because I seem too young and healthy looking to be ill. I want a church that understands I have good days and bad days, and that I might have to call off volunteering for a Sunday because of a flare, but I will try my very best to be there. And I want a church that will still let me help; I may have sicknesses, but I am passionate about helping children develop lifelong faiths, and I am very good at what I do, even if my health sometimes gets in the way of that.

I know not all people with chronic and mental illness are religious, and even if they are religious, maybe they do not attend church for various reasons. But for me, church attendance is very important to me, and I want to find a church where I can be open and help them be the hands and feet of Christ just as much as they help and support me. We don’t have any family in the area, so it’s important for me to find a church to be like family for us.
I have found a church that seems promising, but I have only visited a couple times, so I will have to keep going and see what God has in store for me!

Until then – and past then – I plan to keep being an advocate for Christians with mental and chronic illness because they bring so much richness and value to individual churches and the church universal.

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I’m trying to talk myself out of a panic attack sitting outside the general practitioner’s office like a naughty student at the headmaster’s office. I’m waiting for the paperwork for a transfer to hospital and I am, of course, very scared. There are two ways that my appointments usually go: the younger doctors tend to look a bit panicked, the older ones get that “heart sink” look.

If you aren’t familiar with the phrase “heartsink patient,” it’s a rather derogatory term for patients who are seen as a pain in the backside and you get that “heart sink” feeling when they enter the office. If you Google it you will find stories of doctors who have these patients who waste their time with their (probably fictitious) idiopathic pain. These patients are never “happy,” never get better, just keep coming back! But before you feel sorry for those overworked GPs and their difficult workload, listen to the other side of the desk.

The doctor I saw was less experienced, and she started to look panicked as I outlined my worrying symptoms and history. By the time I was finished she has physically moved back from me, like I was an un-exploded firework that may go off at anytime. The obvious choice, of course, was the hospital, because they’ll know what to do. She is of course making the right decision — anyone this medically complex needs investigation.

I want to make something absolutely clear, this next point is vitally important, ao please take it in and digest: I don’t want to go to the doctors and I’m terrified of the hospital. No, I’m not bored, lonely, slacking off something, or looking for attention. The only reason I would consider going to the hospital is if I believe my life is in danger. Four times the hospital sent me home on the verge of heart failure, twice they sent me home with acute pancreatitis (it will kill you if not treated), four times they sent me home saying it was impossible for my condition to have progressed the way I was claiming (which it had and it was potentially fatal) five hours I sat in A&E before anyone noticed that I was slowly bleeding to death. Every time I was treated like I was a time waster, attention seeker, told that I needed to get serious psychiatric help or that I didn’t love my kids and wanted to get away from them. That is abuse, it is gaslighting, belittling behavior dealt out by someone in complete control of your life.

One night I was in agony all night with pancreatitis and the nurses withheld painkillers for hours and then made fun of the way I was acting “looks like she’s about to give birth!” The hospital is not a fun day out for me, it is somewhere I have nearly died several times and a lot of the time, not in the best care. Not that I’m saying all doctors and nurses are like that, not at all. I used to sit on that side of the desk — they’re just people, people who set out wanting to help other, people who under the right circumstances easily slip into institutional abuse. People who label patients as “heartsink” or “frequent flyers” and don’t see them as fellow humans anymore, just a problem to be passed on as soon as possible.

On a normal day I wake up exhausted and in pain, having had little sleep, because it feels like my mattress is full of rocks. It’s not of course, in fact it’s a relatively new and not cheap mattress, but everything hurts all the time. After several complicated conditions my body has had enough and rebelled, and now I have chronic pain and fatigue. That’s how you become a “heartsink” patient, you survive. Maybe you get through one particularly traumatic accident, or an all-too-close health scare, you pick yourself up and dust yourself off. The doctors involved in saving you get a well-deserved pat on the back. Perhaps you are even interesting enough to get a case study written about you and all the student doctors want to talk to you because you are such an interesting specimen. You take yourself back to work, whatever your daily routine looked like before and you are happy to be alive. You are a success story!

Then, a few month or a year later something else happens. You nearly lose your life again. It takes that bit longer to get back on your feet and you don’t feel able to do quite what you did before, there are complications. After two close calls where you were fobbed off as “over-anxious” you become a self-fulfilling prophecy, becoming anxious about health concerns, about every time you need to see a health care professional. You end up sitting outside the doctor’s office trying to talk yourself out of a panic attack, because you know once you panic, or start to cry, you might lose all respect from the doctor and become a problem no one wants. An over-anxious, crying, hysterical woman with a complicated medical history.

So why do I keep going back to the doctor with constant complaints of fatigue and pain and other conditions that never get better? Well, because I remain, as a fellow person with chronic illness said to me, “defiantly alive.”

This blog was originally published on 2 Tired and a Toddler.

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I’m a medical record number.

I’m a hospital ID band.

I’m a name on a chart.

I’m a hospital room occupant.

I’m an extensive medical history.

I’m a long list of medications.

With an even longer list of symptoms.

I’m a patient.

But I’m more than just another patient — I’m so much more.

My name is Jessica, and yes I happen to have epilepsy, nutcracker syndrome, pelvic congestion syndrome, anxiety, and undiagnosed chronic pain, but I’m more than my diagnoses.

Do you want to know who I really am?

I’m a passionate, caring, empathic individual.

I love helping people which is why I’m a nurse (and one of the reasons I started blogging, to hopefully connect with others).

I’m open-minded and understanding and a bit irritable at times — you can ask my family and my boyfriend, they might tell you it’s true.

I’m not perfect; I don’t ever claim to be. But every day I try to be better and I try my best to not let my diagnoses define who I am.

How do you define yourself?

Follow this journey at Nurse’s Notions

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Living with an illness is hard. It means being ill. It means constant worry that you’re going to be ill. And it means your life is spent managing your illness to avoid being ill.

You can have days when you feel on top of the world and then the very next day you can struggle to even get out of bed. No one would look at me straight after a one hour exercise class and think that I’d spent the previous day in bed, or would spend the following two days barely able to leave the house. Sometimes, thought, that’s exactly how it is.

Now that’s not to say that an hour-long exercise class always results in two days in bed, because most of the time it doesn’t. But what it does mean is that I have to be really careful about what I do, what I plan, and what I worry about.

A lot of people may not fully understand the difference between a rest day and a bad day – and believe me, it took me a long time to realize there was a difference. When I was first ill, I always saw bad days as rest days and actually, that’s not the case.

So in this post, I am going to go over the differences between the two days and for anyone who, like me, didn’t realize there was a difference. Hopefully this post will help you to manage your illness just a little bit better. This post is also for any family and friends who struggle to understand why someone they know with a chronic illness misses things even when they aren’t ill, and why some days they can wake up and they are suddenly very ill.

On rest days these days, I’m not ill.

I have to have these periodically to make sure I’m not overdoing it and I don’t end up having a bad day. In other words, I take rest days to prevent the bad days.

Rest days are part of managing the illness. If I don’t have them, I risk relapsing.

I plan these into my week or month. They aren’t always a full day, but I try and have at least a one-third of every day to rest, and at least one rest day a week, but two or three if possible.

Although I’m not restricted, I tend to stay in the house for these but I don’t necessarily stay in bed.

I can still do small tasks, such as having a shower, getting dressed, and blogging – as long as it isn’t anything heavy-duty like intense exercise or going to work.

I can move about easily enough, there are no restrictions.

I’m usually in a pretty good mood and often feel quite productive on these days. I use them to catch up on TV, do some extra blogging or take time to read a book.

When I start to feel like my body is giving up on me, I can take a couple of rest days to help prevent a bad day. If I ignore these signs or triggers, it results in a bad day.

On bad days days, I am very ill.

These happen once I have overdone it.

Bad days are a result of not managing my illness properly and I wake up feeling drained and ill.

Bad days are part of the “crash.” They occur if I haven’t taken enough rest days. Usually on these days I am housebound, if not bed bound.

I can’t do much more than lie in bed, sleep, and watch TV. Although, I wouldn’t call staring blindly at the TV watching it.

I can usually make it to the bathroom. It may take a while but I do get there eventually.

Sometimes I can make it downstairs to the sofa and stay there for the day.

Bad days can vary. Sometimes I’m ill in the morning and by three or four in the afternoon, I start to pick up again. Other times I’m wiped out for three or four days at a time.

I can go a few weeks without having a bad day if I’ve managed my illness properly. If I haven’t, then I can easily have bad days every other day.

I don’t plan these into my week or month, but I can feel them coming on when I’ve been doing too much.

I really hope these points have helped you out. I know from experience, as soon as I realized the difference between the two, managing my illness became a whole lot easier. It is such an important factor to establish when you have a chronic illness, otherwise you can start to feel like your whole life is just one big relapse.

Follow this journey on Live With Me.

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My body is a puzzle.

A giant jigsaw puzzle made up of many thousands of tiny pieces – organs, joints, hormones, blood, nerves, muscles, genes, microorganisms and more. No one else has the same puzzle pieces as me.

My body is also puzzling me. Pieces don’t seem to be working together the way they are supposed to. Some of them have lost function over time while others suddenly stopped following their job descriptions properly.

I’ve always been happy to see a doctor when I’ve been unwell but have also dabbled with complimentary therapies for decades. I’ve tried acupuncture and homeopathic treatments for hay fever. I accept the principals of reflexology and the concept of “chi,” “prana,” or energy lines running through the body. I also attended weekly yoga classes for 15 years, which benefitted me far more than I realized at the time. It was only several years later that I realized how much my health had declined since I stopped.

I guess I had never fully explored the rationales behind some of these approaches to health – or, if I did, I never acted on them. I did instinctively lean towards an integrative approach to my health, though. I just didn’t know it by that name.

Possibly part of the reason I didn’t turn to these therapies as my first source of treatment is that I am very wary of the “snake oil salesmen“’out to make a quick buck selling “natural” therapies that have no reliable evidence to back them up.

I am also wary of anyone who claims they can “cure” health issues instantly or who says that theirs is the only way. The trouble is, many of these opportunists have become pros at making themselves and their products appear legitimate so they can sometimes be hard to spot.

So, as pieces of my body started misbehaving, I saw a doctor.

In my late teens, it was for hay fever. Over the next 20 years, I went for help with irregular periods that slowly worsened. (I was later diagnosed with endometriosis.) I occasionally had allergic reactions and bowel issues too but I did not connect them with my diet at that stage.

The year 2007 was a turning point for my health – and not in a good way. I had the stress of moving house. My hay fever was out of control and I frequently had sudden and severe blood noses. I also travelled overseas and was covered in mosquito bites on that trip. Thankfully, I didn’t develop any scary diseases, but it did mean I was on antihistamines almost the whole year.

I saw a new doctor who started me on immunotherapy for hay fever and dust mites. This worked like a vaccine. Each week for 12 weeks, he gave me a sub-cutaneous injection made up of the allergens that were causing me trouble. The difference was amazing. I repeated the process for two more years just before spring and I have not touched an antihistamine since.

Looking back, I can see all these factors put my immune system into turmoil but I didn’t see the connections at the time. Around November that year, my joints started to hurt and swell randomly. Back to my GP who instantly recognized it as rheumatoid arthritis which was confirmed by blood tests.

Then the drugs started coming. I took different ones to suppress my immune system, reduce the inflammation and control the pain. They weren’t enough to stem the rampage my immune system was on, though. I have tried several additional drugs since, including four biologics. Some worked a little, or worked but then stopped. Some just didn’t work at all, but I still had to try them for several months to “wait and see.

From there, I started to break apart. I’ve had a rare fungal infection in my lung that was removed surgically, my endometriosis was finally diagnosed and removed, I was tired all the time and had trouble concentrating at work, my ankles had puffed up with excess fluid and, just for fun, I damaged a tendon in my foot.

Even then, I wasn’t finished. From late 2013 until early 2015 I was in free-fall. I was diagnosed with fibromyalgia, then shingles and type 2 diabetes (on the same day), rapidly-growing cataracts in both eyes and a blood clot in my lung probably caused by taking the pill. The diabetes and cataracts were both caused by my long-term use of steroids. Each new issue added a new drug to my daily arsenal and a new specialist to see.

I have no doubt that my doctors all had my best interests at heart and that most of the treatments they offered did help. However, each issue was mostly dealt with in isolation without looking for the underlying cause. I was also reluctant to make changes to things like my diet while I was waiting to see if the medications worked or not. I wanted to keep some things constant, otherwise, I would have no idea what was helping.

I have asked lots of questions along the way and have actively been involved in all decisions, but not all my questions were answered to my satisfaction.

Questions like: Why is my hair falling out? Why do I still struggle with fatigue? Why do I sweat so heavily from my face and scalp? Why do I have huge bags under my eyes?

With every question, I would be told, “I don’t know. Your test results are okay. There is no treatment for that. You should ask your specialist.”

After years of pulling the pieces of my body apart and examining them in isolation, I now feel like some pieces have gone missing or been overlooked. I yearn to be whole again so I’m now going back to the “whole health” approaches I’ve tried in the past for some answers.

I’ve already started to make some dietary changes such as regulating my sugar intake and increasing the variety of healthy food I eat. I am slowly cutting down on some medications. I’m going back to doing yoga regularly. I’ve even sought out a local integrated health practitioner who just happens to be one of the doctors I’ve seen in the past.

I’ve always been pro-active in my health decisions. The problem for me is that I never fully realized the extent of my choices. I simply trusted that the conventional medical system would work for me. It did to an extent, but it has also left some massive voids that need to be filled before I can put my puzzle back together and be truly healthy.

I now have to push my boundaries further and finally trust what I have always known. That doctors alone can’t heal me. Only I can heal me. I have an unknown path ahead but I plan to follow my instincts and walk that path with confidence.

Originally shared on CreakyJoints.

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