collage of pictures including a woman raising awareness for lyme disease and her medications

10 Things I've Learned From Being Sick for 10 Years

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I frequently talk to people who are new to the Lyme disease/chronic community and am often asked what to expect, what will happen or if I have any “words of wisdom.” After being sick for the past 10 years I have learned certain things along the way that will hopefully help others along their journey. Everyone has a different experience of course, but I’ve found that some things never change, no matter how many times you come out of remission.

collage of pictures including a woman raising awareness for lyme disease and her medications

1. Forgive yourself.

There will be times you will have to go back on plans you’ve made and you will feel terrible about it. It could be as little as making plans to grab lunch over the weekend or as big as standing outside theatre doors in NYC 10 minutes before the show starts and needing to leave (this is what happened to me about two weeks ago and it was the worst day ever). Your life is unpredictable and your body is constantly in flux – be gentle with how you treat yourself emotionally. You can be doing every single thing right when it comes to physical treatment, but if you don’t learn to love yourself and forgive yourself for those tough calls on when you need to take a time out, then you’re not fully treating your illness.

2. Learn to say “no.”

This is so important. You don’t owe anyone anything. Just because you’re having a good day doesn’t mean you have to spend it making your rounds. You have so many bad days that you deserve to spend your good ones doing whatever it is that makes you happy. You earned those days – take them.

3. You might lose a lot of people.

The obvious losses are the friends you had when you were healthy. You cannot keep up your old lifestyle when you have a chronic illness and most of your old friends will at least try to stay in your life, but may fall away as your lifestyles continue to grow apart. It took me seven years to finish college because of my Lyme disease and with each new year, friends have come and gone with each group, creating a bigger age gap. Now all my friends are living the college life, going out partying and drinking, and I just can’t do it anymore. Not just because I’m sick and don’t leave the house, but because I just don’t want to. I’ve lost boyfriends because they didn’t understand how to be with me or how to love someone who was so sick, so they avoided me like the plague I claimed to be possessed by. I’ve lost some great co-workers because I can no longer get to my job anymore. I’ve lost beloved family doctors because they didn’t believe me when I said I was ill. I’ve lost the respect of a great deal of people because they think my being home sick is an act of laziness or a cry for attention. This disease has taken most people out of my life and I’ve had to learn that those who truly belong in it will make every effort to stay.

4. You will find comfort in the kindness of strangers.

I have found some amazing individuals through Lyme support groups. We trade remedies, swap stories, offer guidance to one another and answer each other’s questions. This wonderful population knows my struggles and understands my grievances. They too have walked this path and feel the sense of loss that I have: loss of support, loss of physical and mental abilities and general loss of power, just to name a few. These are the people who are up all night long fighting the same battles, the people who can talk you down when you’re at your breaking point because they too have stood in that same spot. They have home remedies and life hacks to make your life a little easier and less painful. They have tried the same medications and have felt the same side effects. Consider this your chronic clan, your sickness society and your disease domestic – these are your people and your second family.

5. Find what makes you happy and turn it into a ritual.

In the very beginning of my journey I was up every night terrified to fall asleep because I was afraid I wouldn’t wake up the next day. My mind and heart would race and I had no idea what was wrong with me. I didn’t know what to do with myself. I found comfort in the things that made me happy: comedy and crafting. I would have comedies on repeat for hours upon hours as I would create little gifts for people. In my head, the laughter made me happy and my creating something for someone I loved would make them happy (which in turn would make me happy). I discovered The Big Bang Theory, Family Guy, Kevin Hart and loved anything with my personal idol, Melissa McCarthy. I think I could single-handedly keep Netflix in business based on how many times I’ve had some sort of laughter-inducing video on there. I found that when I had something funny playing on my iPad I was finally able to get myself in a place where I could lie my head down and catch a nap. These naps became longer and longer with each new day, to the point where I could finally get a (somewhat) full night’s sleep. It took some trial and error but I’ve had the same routine for the last several years and it has not let me down yet. I craft when I can in the daytime (I enjoy making greeting cards) and I have Netflix going with something that makes me feel good. At night, I talk to my guardian angels above and pray I will grow stronger and close my eyes as whatever is playing on my tablet slowly fades out. This is my happy place. Everyone is different. The trick is to find whatever it is that makes you get out of your own head, stop being afraid of the unknown and focus on grounding yourself. Maybe you like to read, watch television, take long baths, pray, meditate or roll around in a field of puppies (one can dream, right?). Whatever it is, do it as often as you can. The longer you can stay in your positive space, the less time you spend in a negative one. Laughter is definitely the best medicine in my experience, but you might need a different anecdote.

6. You will never be more organized in your life.

As a chronic warrior you have far too many things to keep track of on a day-to-day basis. As someone with no energy whatsoever, I have to plan my entire day around how much energy I have when I wake up. Do I have the energy to shower, to prepare my meals, to walk and feed the dogs, to check the mail, etc. These are all important factors in planning my day. I always put my dogs first. If they’re happy and healthy then I’ll figure myself out later. I have to time out when I eat so I can take my medicines and leave enough time in between to take Tylenol if needed. Lord help me if I have to leave the house because then I have to make myself look like a person and then take all my pills with me. I can’t take certain meds too close together or they will either cancel each other out or cause a bad reaction. I have to allow time for me to feel the side effects of certain medications; if I have to take certain medicines that make me nauseous I’m not going to want to do anything soon thereafter, but if I need to take them with food then I have to be prepared for the likely scenario that I will throw up. If I take my nighttime pills too early I will either wake up in the middle of the night or I will miss my drowsy window entirely and will be up until morning. I have so many lists and planners that have my days timed perfectly and yet no matter how well you plan, life happens. You could be so sick that day you can’t get out of bed until 4:00 in the afternoon. Not only does this throw all medication timing off but you will have missed meals that are necessary to go with them. Timing is everything with a chronic illness, and the longer you’re sick the more you learn that you are both a pro and an amateur.

7. You will get an unofficial degree in Pharmacology.

Chronic patients have a colossal amount of pills, jars, bottles and supplements and you need to know the dosage, when to take it, what you can and cannot take it with and the possible side effects. You’ve been down this road so many times you can go into your doctor’s office and know exactly what you will wind up leaving with. You know every drug interaction, you know what should be taken on an empty stomach or with food, you know what drugs don’t sit quite right with you and you know drugs similar to it that can cause the same effects. You’ve tried every herbal remedy out there, you know which ones are bogus and which are lifesavers. You’ve taken so many pills over the course of your life that when you get a headache now it becomes second nature to just ride it out instead of having to swallow more medication. You know which drugs will make you more vulnerable to certain stimuli – when you cannot be in the sun, when you need to avoid certain food groups, when you cannot be in extremely hot/cold climates because the temp will send your body into a tailspin. You are a seasoned professional when it comes to medication – now if they could just send you the degree in the mail you’d be all set.

8. Some people will never fully “get it” and that’s OK.

It is important to raise awareness for all types of chronic illness. I, for one, try as best I can to promote Lyme awareness because of how susceptible everyone is to a tick bite. I have tried on countless occasions to describe what my life is like when I am sick and actively trying to treat it, and while some try to understand, they just don’t get it. Not everyone is going to understand your struggle and that is OK. The important difference is even though some people will never comprehend what is going on, if they recognize the illness and empathize with your feelings you’re headed in the right direction. The goal is to raise enough awareness to create movement on the government level to fund research so that we may one day be free of these spirochete shackles. If your goal is only to make everyone feel your pain, you’re fighting an endless battle.

9. It’s OK to be scared.

This is self-explanatory. No matter how long you fight, there is still no cure. It’s OK to be afraid. Recognize your feelings and embrace them. The only way you will lose the fear is by keeping it buried beneath the surface. No person should fight alone and they don’t have to. There is a tremendous support system on the internet and thousands have come before you walking this very same road. You are not alone, you are loved and you will get through this difficult time to better days ahead. I can say this with utmost confidence because not only have I been on the ledge, I have jumped hoping for a “way out,” and thankfully someone caught me before I hit the ground. I have been at my very worst and have come out on the other side. There will always be those days where you wish you could flip the switch and end it altogether, but I promise a permanent solution to a temporary problem is not the answer. Talk to people. Talk to those you love, those you don’t know but understand or those who have been there before. Someone is always listening and will always be there, just maybe not in the ways you’d expect.

10. You will appreciate being alive.

If being sick has taught me anything, it is learning to appreciate everything life has to offer. I take more risks, I have fewer regrets and I appreciate the natural beauty that is the simpler things in life. I love fresh air, flowers, going for walks, human interaction – I could go on and on. Life is a beautiful gift and if you’re reading this you are lucky to be alive. Go enjoy it in whatever capacity you are able and turn your face towards the sun. Take long, deep breaths, make time for the things that make you happy, help those in need because you know what it’s like to be without and do everything you can to embrace this moment because you never know how many more you are going to get.

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aubrey winkie laying on couch wearing surgical mask

To the Doctors Who Denied My Lyme Disease

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I do not want you to feel singled out by this letter. I am hoping you learn something from it and one less person will have to go through what I did to receive a diagnosis. You were only one of seven doctors who told me I did not have Lyme disease when I told you I thought I did. I do not completely fault you on this response because it is clear that the medical community is not getting the proper training on this disease and the inaccuracies of the diagnostic tests.

However, some doctors treated me so poorly, it should be inexcusable. I was told “it was all in my head or I was depressed,” I “just wanted pain killers,” “just because Avril Lavigne gets Lyme everyone thinks they have it,” “there is nothing medically wrong with you” and the list goes on. This was while I was slowly wasting away and deteriorating from this disease as I was bounced from specialist to specialist. I went from riding motorbikes through the Kenyan jungle while working for an NGO, to being unable to get out of bed. I went from getting accepted to Yale for graduate school to struggling to speak and being unable to read and write.

I started having seizures, the joint pain made it excruciating to walk, I struggled to catch my breath, I would black out and collapse when I stood up. My memory faded. I couldn’t drive anymore because I would get disoriented and lost. I couldn’t remember what happened a few days prior or even what I wore the previous day. Several times I felt like I was dying while simultaneously being told by doctors there was nothing wrong with me. I hope that by sharing my story I can prevent someone else from having to go so long without being diagnosed and bring awareness to this disease.

aubrey winkie sitting in chair at doctor's office next to iv giving thumbs up

Here are a few things I would like to clear up about this disease that you may not know, according to the International Lyme and Associated Diseases Society (ILADS).

Fewer than 50 percent of patients with Lyme disease recall a tick bite.

Fewer than 50 percent of patients with Lyme disease recall any rash.

The common Elisa test you receive at your doctor’s office misses 35 percent of culture-proven Lyme disease. Some studies indicate up to 50 percent of the patients tested for Lyme disease receive false negative results. Lyme disease can cause an autoimmune response which means patients are not creating antibodies for the infection which is what the test identifies.

Up to 50 percent of ticks in Lyme-endemic areas are infected.

The CDC reports that Lyme disease infects 300,000 people a year, 10 times more Americans than previously reported.

There are more cases of Lyme disease than breast cancer and HIV combined.

The average patient sees five doctors over nearly two years before being diagnosed.

Common symptoms include: fatigue, neck stiffness or pain, jaw discomfort, muscle pain, joint aches like arthritis typically in the knees, swollen glands, memory loss, cognitive confusion, vision problems, digestive issues, headaches and fainting. The earlier a patient gets diagnosis, the easier it is to treat.

row of needles, injections and bag of iv fluids

I am now a year into treatment and have made major improvements. However, because I was diagnosed so late, the Lyme bacteria were able to infiltrate so many parts of my body including my brain and heart. This makes it very difficult to completely eradicate the disease.

Here is my request. If you or a patient thinks Lyme disease is a possibility and the test comes back negative, please tell them, “These diagnostic tests are known to be inaccurate and if your symptoms persist I would recommend seeking out a Lyme disease specialist. You can find a list of specialists who have gone through specific training to diagnosis and treat Lyme at ILADS.org.”

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Follow this journey on Instagram at @aubreys.lyme.journey.

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Why I'm Urging Everyone to Create a Tick Kit

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I want you to create a Tick Kit.

Yes, that’s right. A Tick Kit.

I may be a tad obsessed, but I prefer the word aware. I’m aware because it’s real. It happens to anyone. Anywhere. Any age. And it is hell. A daily, living hell. If you are close to someone who has battled Lyme, you get it. You’ve seen that world, and you don’t want any part of it. You aren’t the person I need to persuade. You may skip the pleading in the next couple paragraphs.

I’m talking to the person whose little voice inside her head is whispering, We don’t live in an endemic area. We aren’t outdoorsy people. I am a healthy person; I eat right and exercise regularly. I’ve never found a deer tick on me or my child.

These excuses are invalid. Healthy people who don’t partake in outdoor activities like camping or kayaking and who live right here where you live have been diagnosed with Lyme disease.

Or maybe you are thinking, I use a tick repellent. I check my kids regularly. We wear light-colored pants when in the woods. We shower as soon as we get home.

That’s great! I’m so thankful you are taking precautions.

But keep reading.

Let’s imagine you notice a piece of black fuzz on your child. No big deal, right? Upon closer examination, you realize that the speck is actually a tick. It’s tiny. A fraction of the size of a wood tick. Time is critical.

Every second that tick feeds on your child’s blood, it is potentially injecting him/her with Lyme, Babesia, Bartonella or other co-infections. Ticks usually don’t just have one infection. Tick-borne infections are zoonotic – meaning they are passed from animals to humans. “Vectors” like ticks, mosquitos and fleas transmit the diseases from animals like mice, rats and squirrels to humans when they bite. Ticks can carry many bacteria, viruses, fungi and protozoans all at the same time and transmit them in a single bite. They carry the infections passed on to them from their parents and those of every animal they’ve ever fed on. There are so many co-infections, in fact, that scientists still don’t even know them all!

What do you do?

There’s no need to panic. You’ve read about tick removal before. While you take a minute or so to find this blog post or to Google instructions, the tick continues to feed. While you look for tweezers, the tick continues to feed. The clock is ticking. No pun intended. What do you do?

You need a Tick Kit. The contents are simple: a pair of tweezers, alcohol swabs, a couple index cards or Post-it notes, a sharpie and some clear tape tossed together in a Ziploc bag. That’s it. You probably already have these items in your home, right?

But do you know exactly where to find them? If your house is like mine, tweezers seem to disappear periodically only to return two or three at once a few weeks later. Would you have to race to multiple rooms in your house to locate these essentials? While you are searching, the tick continues to feed.

I discovered these handy dandy tweezers designed specifically for tick removal. I’ve used them twice this year to remove ticks, and they are ideal. Any tweezers will work, of course, but the thin tip makes this the perfect tool for removing ticks, especially from the scalp, without leaving any part of the tick in your child’s body.

Please make a Tick Kit. Heck, make two. Prepare one kit for your home and one for your vehicle, especially if you’re traveling this summer. Seriously. Go. Come back and read the rest of this once your kit is together.

Alright, so what do you do with that tick? (By the way, please don’t skim over this section. Don’t wait until you need it because, just like a scavenger hunt for Tick Kit items, you’ll be wasting precious time.)

How to remove a tick:

1. Use fine-tipped tweezers to grasp the tick as close to the skin’s surface as possible.

2. Pull upward with steady, even pressure. Don’t twist or jerk the tick; this can cause the mouth-parts to break off and remain in the skin. If this happens, remove the mouth-parts with tweezers.

Avoid folklore remedies, such as “painting” the tick with nail polish or petroleum jelly, or using heat to make the tick detach from the skin. Your goal is to remove the tick as quickly as possible – not to wait for it to detach. There is much “talk” online about putting peppermint oil on the tick. No, no, no. Sure, it will back out, but not before regurgitating back into the skin, which is exactly the opposite of our goal!

3. Tape the tick to an index card or Post-it note. Write the date, time and location. If symptoms would later arise, this quick document will help doctors determine the type of tick, number of days since initial bite, etc. (I do this for all ticks, not just deer ticks.)

4. Clean the bite area thoroughly with rubbing alcohol.

OK, so we’ve removed the tick, cleaned the site and logged the event on an index card. Now what?

Monitor the site and the patient closely. Symptoms are generally not immediate and can present three to 30 days from the initial bite. Symptoms are often flu-like – fever, muscle aches, headache – and/or a bull’s eye rash. You do not have to have the rash to have Lyme disease, nor do you have to have every symptom. These are dangerous misconceptions.

You also have the ability now to send the tick off to be tested. Sending the Midcoast Lyme Disease Support and Education your tick(s) allows scientific researchers to gather data about ticks from all over the United States. Scientists can broaden their investigations into tick populations and glean information on the current distribution of the major tick vectors and the prevalence of tick-borne pathogens that people encounter in different locations. By sending them your tick(s), you are participating in a citizen science project and national tick-collection/testing effort which will enable these scientists to compare past and potential future distributions of ticks and tick-borne disease. Our hope is that by collecting this data, we may be able to predict where risk of disease is most common.

The tick can be dead or alive, but ideally collected less than 72 hours ago. Put your tick in a small Ziploc baggie with a moist cotton ball or piece of wet paper towel. If you have access to a small vial and alcohol, you can use that instead. Click here for more information.

Someone asked me once what I would do if I found a deer tick embedded in my daughter’s skin. I answered without hesitation. I would take her to the nearest urgent care and request treatment for Lyme disease. After the years of pain I’ve been through, I would rather be overly cautious, giving my child one round of potentially unnecessary antibiotics, than to be hesitant, providing Lyme spirochetes more time to infiltrate her cells, tissues, joints, heart and brain. Research has shown early antibiotics are consistently effective in treating Lyme, particularly when treatment begins within the first 30 days of infection. To me, a round of Doxycycline is worth the minimal risk, comparatively speaking.

Of course, this would be after I’d used my Tick Kit to remove the deer tick, clean the area and document the incident.

Think about it this way. We actively prepare for most negative events in our lives – life insurance, car insurance, flood insurance, home insurance, health insurance. Planning does not mean we want our house to flood or our teenage son to get into a fender-bender or our husband to spend an evening in the ER. We hope we never need to use our insurance, but we pay our premiums — just in case.

Talking about it and preparing for it makes us responsible.

So, do me a favor. Go grab a Ziploc bag and throw together a little tick insurance. Once you get it put together, snap a picture and share it at #tickinsurance. Show me you’re listening and protecting your family by putting together a Tick Kit.

Just in case.

This is the third article in a four-part series on tick safety and Lyme disease. Read the first article here and the second here.

Follow this journey on A Broken Crayon.

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To the Friend I Had to Cancel On... Again

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I cancelled on a coffee date with one of my friends again. This is the second time now. I am sure she thinks I am faking being sick and just don’t want to see her. But it’s not her, it’s me. Everything was just wrong about our meeting at three in the afternoon. I am beyond exhausted at three. I get up early for work and come home and crash at noon. I then have lunch and nap for two hours but never wake up refreshed – I’m still tired in a way no amount of sleep will ever take away. My body hurts. My joints are burning, my head is aching and I feel crabby. The last thing I want to do is go out and chat over coffee and scones.

It seemed like a good idea at the time when I made plans last week. We talked in the morning during my two hours of energy right after I got to work. I thought it would be OK to venture out and catch up with a friend. But as usual, it was not. I feel as though I have no life. As the 3:00 hour approached, panic began to set in. Can I call and cancel again? What excuse could I use this time? How in the world could someone still be sick for two weeks in a row? Yes, she knows I have Lyme disease, but does she really know I have Lyme disease?

I fight to be normal. To have normal activities with my normal friends. But I fail every time. The caffeine wears off, the pain sets in and I just can’t. I can’t fake that all is well. I can’t smile and say, “This is so much fun! Why did we take so long to get together?”

So, I text and cancel. Since no emergency came up, I had to tell her the truth – that I am still not feeling well and must have gotten that bug going around the office (I know I got it and every other bug that was out there). I apologize and say how sorry I am to cancel again but I would hate to pass on this nasty bug to her. I then turn the ringer off on my phone and lie down on the couch, feeling like a loser. Why do I do this? Why do I even make plans? My guilty conscience won’t let me rest so I fire off another text. “want you to know that it’s not you; it’s me. It’s my Lyme disease that makes me scratch plans at the last minute. I feel horrible. I hate being sick. But, I love you. I wish I were different. Thank you for still being my friend and wanting to see me. I wish I could be a better friend to you. I miss you!”

There – I did it. I was totally honest this time. It may not change anything about my condition and my need to abandon well-intentioned plans, but at least I feel better to have explained why I had to bow out. I may lose another friend. I understand that.

I can rest now, and dream. Dream of the day when it’s wasn’t me who was sick and had to miss out on life. The phone shatters my approaching slumber. It’s her! Panic. I can’t answer it for fear I will not sound sick or weak enough. I quickly set the ringer to off again and turn my phone face down. I can’t talk to her, to anyone. But if I could talk I would say a million times over; it’s not you, it’s me. It’s not you, it’s me. It’s always me. But, can you love me anyway? Love me still? Even if you never see me or hear from me?  Even if all you must go on is memories of how I was before. That’s all I have – the time when it wasn’t just me but us: you and I together laughing with the pleasure of a million birds in flight, facing a glorious sun in the bright blue sky on a lovely day in May. A day like today. Please remember me while I rest alone on my couch with the shades drawn and a blanket pulled up to my neck. And pray that someday I will be able to rise and join you and it will be us together again, and not just you and me alone.

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Thinkstock photo via monkeybusinessimages.

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To My Son, Who Has Lyme Disease Like His Mommy

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Dear little one,

You inherited Mommy’s long eyelashes; I lay here admiring the sun dancing through them as your eyes flutter underneath to whatever magical world you are living in in your dreams. The freckles that sprinkle your nose come from Daddy. I hope you get his patience and understanding.

My little one, I am sorry. Your Mommy brought you into a world that was meant to be filled with everything your heart could imagine. I was supposed to be your Super-Mom. I did not know that what lay ahead was a mommy who was barely there. A mommy who yelled too much, slept too much, cried too much.

Everyone comments on your beautiful red hair. That comes from Daddy. People don’t hear you cry out at night when your legs hurt so bad you cannot sleep. That comes from Mommy, because we share the same illness: Lyme disease. If I could take all of your pain away my little one, I would in a heartbeat. The pain of my own illness pales in comparison to the pain of knowing I passed this to you.

My little one, days meant to be full of finger-painting and catching bubbles are now spent in waiting rooms. Playdates have been replaced by specialists. I should be the one kissing your scraped knees and singing you lullabies, but far too many times you sit by my side, stroking my hair and telling me, “It will be OK, Mommy,” as I can no longer hold back my tears.

My little one. My brave one. My strong one. This fight is no longer my own. I may never get to be the mommy I had hoped to be. I may never play soccer in the backyard or be the PTA president. But I promise I will fight this disease. And I promise I will one day be your Super-Mom.

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Thinkstock photo via Choreograph.
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6 Ways to Make Sure You're Getting the Love You Deserve With Illness

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I would answer the phone and hear my mom’s voice on the other end.

“How are you feeling today?” she would ask. “I’m OK,” I would respond. “You sure?” she would ask again. “Yes, I am good.” I had become so disconnected from the question that my answer was practically pre-programmed. The truth was, I felt like crap, but I got tired of hearing myself mention it and I also thought people got tired of hearing me say it. It became easier to simply lie.

Being sick with a chronic invisible illness, we truly start to live in a world where we are afraid to share what we really feel because we worry if we tell the truth we will become more detached to the people we love most. Our lives can become very fear-based.

Fear of being sick, fear of sharing that we are sick, fear of being disappointed, fear of not being understood. Fear of never being able to be free from both the physical effects of the illness and fear of truly connecting with people as our honest and authentic selves.

We assume things like we are a burden, people won’t understand, people can’t understand. These assumptions can sometimes only deepen the pain and create more distance in relationships with the ones we love because we feel completely detached. It is a vicious cycle of not being able to express needs and anticipating rejection. These assumptions about others often create a large distance between the people who love us the most.

We can’t control that the people who love us may be quick to offer solutions. It is what they think is best to do and it is what they think they can do to help us. I learned that most of the time, the actions that caused me to close up were things that were really meant to be helpful, but I was having a hard time simply expressing what I needed.

In order to heal from our sickness it is essential we have a strong support system, and sometimes we need to take some responsibility in creating that system. It took me a very long time to come to that awareness and take personal responsibility for getting the love I wanted and needed.

Here are some steps I practiced to make sure I was getting the love I wanted and needed even though I was chronically ill:

1. Share with the people whom you love the most how you are feeling. Feel the fear and do it anyway.

This is not always easy to do. It is quite often scary to do. We fear that people will not understand us or will judge us for complaining. We worry that we will turn people away by telling them how sick we are and we feel like a burden. The truth is, the people closest to us are here to support us along our journey in life. They are here to help us feel safe and secure. The one way to create this connection with those people is to share ourselves with them. It is to be transparent about what life is like for us without fearing rejection or dismissal. Sure it will be hard at first, but it’s worth a try. At the very least, you will know what you are getting into. You will be able to see if someone is willing to share themselves with you as well.

We are all struggling with something, even if we all do not have chronic illnesses. Your partner or friend may be struggling with difficulties at work or problems with their own family. Just share yourself and be willing to listen to them share as well. Even if we are connecting about different pain and different struggles, it’s still connection. Be willing to show yourself and be willing to be present for the other person when it’s their time to share. If talking about it makes you uneasy, keep a journal for yourself. Sometimes we are unable to even know how we feel, especially if we are plagued with neurological and psychological symptoms from our illness. We often don’t understand what we are feeling and therefore it’s impossible to even begin to share with others. Keeping a journal can be helpful for ourselves to hash out our own fears and frustrations. If you are having trouble talking about what’s happening, you can invite your loved ones to read from it. Maybe then it can give them some insight to what’s really happening in your life with chronic illness.

2. Be clear on what you want from the people around you – very clear.

One of the most valuable lessons I have learned through my journey is that people are not mind-readers. I was always so frustrated that people would not do the things or be the person I wanted them to be. With every disappointment came more validation in my mind that my sickness would prevent me from having the life I wanted. It became a self-fulfilling prophecy. Anticipating rejection, I was turning people off and away from me. Get clear on what you want from people. Write it down. You can’t be mad at the world for not responding to you in a positive way unless you get clear with yourself on what type of support you are looking for. Once you know what you want, politely ask for it and explain why it’s so important for you to have it. If you find that when you share with someone you love how you feel and they are quick to say things like, “Go take a walk” or “Don’t stress over it,” understand that they believe this is the best way they can support you: by fixing you and offering their advice.

Be clear with them that although you appreciate the advice, you are simply looking to be listened to. That can do wonders for any relationship in reducing your loved one’s constant thoughts of how they can better help you and your own thoughts of feeling dismissed and misunderstood. Also be mindful that a relationship involves two people and those people have needs too. Don’t get so mixed up in your own sickness you forget there is another person whose needs should be considered equally.

3. When people show you what they are capable of or not capable of, believe them.

Like any dysfunctional relationship where you’re with someone who has bad habits in the hopes of changing them, realize this will never happen. Ever. As cliche as it sounds, you cannot change people. People have to change for themselves. You can help facilitate that change by treating them with compassion in spite of how they disappoint you or trying to understand their point of view, but you ultimately cannot change them. If someone is treating you unkindly or without compassion, you will more than likely not change that.

It is something you will have to ask yourself if you are willing to accept in your life. If you are willing to sacrifice being supported and loved by your partner, it’s probably a good idea for you to do some work on figuring out your self-worth and perceived value. Being sick doesn’t make you damaged. It doesn’t mean you don’t deserve to be treated with respect. It doesn’t mean people won’t love you. There will in fact be people who will love you not only in spite of your disease, but because of it. For every person that disappoints you, there is someone else waiting for the opportunity to get to know someone as wonderful as you.

4. Take nothing personally.

This was huge for me. Don’t take things personally. The way a person treats you or reacts to you is not at all personal. They have their own things going on in their heads and in their lives. Be respectful of that. If someone talks a certain way to us or is disappointing us, it’s always helpful to not take it personally. A more loving approach is to simply check in with them and see what’s underneath it all.

If someone is unkind to you, it has everything to do with them and really nothing to do with you. Sometimes people are struggling with their own fears and feelings as well and they need a little help and encouragement along the way. Sometimes it’s good to remember that everyone is having their own unique experience and simply try to show them the same amount of compassion you would like them to show you. When you do that, you may naturally help assist them in being more compassionate themselves by example.

5. It is better to be alone than to be with someone who does not support you or makes you feel alone.

When you are sick, you may feel damaged or worthless. I know I did. I often worried about my future and wondered who would ever be able to love someone as sick as me. I wondered who would want to stay home on a Friday night when everyone else was out having lots of fun. I didn’t think anyone would make that sacrifice for me. The truth is, some people won’t and thats completely OK. Ask yourself how much that matters to you. If it matters a lot that you have someone by your side most of the time, let go of that person who always lets you down. It is better to be alone than with someone who doesn’t help foster a supportive environment for you. There will be more fish in the sea. The person who isn’t treating you with compassion is worth letting go. Your health is the primary priority. Living in a stressful environment will only make your health worse. The goal with all chronically ill patients should be minimizing stress at all times.

6. Remember you are more than your illness.

There were times I was so sick that I seemed to have forgotten my real value and self-worth. Keep in mind that you are not just a sick and wounded person. Yes, you have tremendous hardships physically at times, but you are more than your disease. Within you, you are still the loving, capable, wonderful person you have always been. That counts for something. Reminding yourself you are still a perfect person in spite of that goes a long way. Healing for me came from numerous sources but believing in my ability to still accomplish all I wanted to kept me going. It kept me mindful that I had purpose. Don’t forget you have purpose.

One day, these hardships will hopefully be just memories to you. Although very painful and difficult, they also helped me gain purpose in my life and perspective. I had often wondered who I would have been if this did not consume my life for all these years, and I realized there is no doubt I would have been a much different person. But I can’t be sure I would have been a better person. Believe that through our greatest trials and struggles, there is something beautiful on the other side.

Life is a heck of a journey for all of us but you are still here fighting for a reason. There is a superhero in all of us and no beautiful story is complete without some bumps and turns along the way. Be grateful you have people to support you in life, and if you don’t feel that support, go out and find it. There are tons of people who want to help you along the way.

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Thinkstock photo via kieferpix.

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