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To My Newly-Diagnosed Friend, From Someone Who's Been In Your Shoes

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To my newly-diagnosed friend:

You’re allowed to be scared. Finding out you have a disease that has no cure is scary. Finding out that you will be living with this for the rest of your life is scary. Finding out that you may get worse is scary. Having to explain to your family and friends that you’re never going to just get better is scary, but you can do it. Because you’ve survived this long. You’ve survived all the months and months of appointments and tests searching for answers and maybe it’s not the answer you were hoping for, but it’s an answer.

Yes, this is going to change your life. You may not be able to do all the things you had planned. You’ll probably end up spending a lot more time at the hospital and in doctor’s offices than you do out with friends. But it can also make your life fuller. Every time you are able to go out and spend time with friends you will appreciate it more. You gain this deep appreciation for very little things in life, like being able to go for a walk with your love or cuddling up with a child or a pet. Somehow I think being sick seems to make you love deeper. You may appreciate the little things you used to take for granted, like being able to cook a meal or read a book or take a nap or simply spend an hour laughing with a friend.

Yes, you may lose some friends. Some people just do not understand or become too overwhelmed with all your medical stuff, but that’s OK. Because the friends who stay, the friends who keep texting you even when you don’t answer for days, the friends who want to know all about your life and don’t mind listening to you vent, the people who don’t care that you can’t come hang out with them because that’s what text messages and FaceTime are for, the friends who when you tell them what illnesses you have Google it and find out as much as they can about it because they care about you and want to know, the friends who refuse to let you push them out — they are the ones who matter. They are the ones who will still be there when the dust settles.

MIGHTY PARTNER RESOURCES

I’ve honestly been amazed at the support I’ve gotten from people in my life. My friendships have become so much more important and special. I’ve truly learned that I have been blessed with so many amazing people in my life. Getting diagnosed with rare diseases isn’t really the easiest way to find out who your true friends are, but it’s certainly effective.

Having a rare disease gives you a chance to make new friends, too. There’s this whole world out there of people just like you who are living life with rare diseases. Literally a whole world at your fingertips thanks to social media. In the last two years since being diagnosed I have made some of the best friends I’ve had in my life. I’ve made friends from all over the world. People who understand me and what I’m going through on a daily basis. People who aren’t ashamed to talk about all the embarrassing parts of being sick. People who will make you feel normal. People who will make you laugh at the fact that you fell asleep on the bathroom floor for a few hours. People who also have painsomnia so they are always up for late night chats. I’ve learned so much about other cultures and other countries during those late night chats. I’ve also learned how badly I need to go visit New Zealand.

You might see the people in your life so much differently and appreciate the little things they do for you so much more. You may realize there are so many wonderful people in this world who want to help you, people who want nothing in return but a smile and gratitude. It can be hard at first to accept the help if you’re so used to being independent and doing things for yourself, but let them help. The people that know you and love you are feeling just as helpless as you are right now. They want to help you but they have no idea how. They hate seeing you suffer and wish they could take it away. So let them help. Let them come over and clean for you or come make dinner for your family. Let them take your kids for awhile so you can take a much needed nap. Because these people love you and they may need to feel like they can make a difference in how you feel. Plus, that’s one less thing you need to spend your limited energy on, so you can have a little more time you can spend snuggling with your kids or a chance to go on a date with your love.

Never lose faith. This one can be hard on the days when you are so sick and see no end in sight but I think it’s extremely important. When you are living in a body that’s constantly battling against you it’s so important you don’t allow yourself to get stuck in your own head. It’s not easy. It’s probably going to be really, really hard and you aren’t expected to stay positive every single day, but I think trying to find a small blessing in each day is so important. Before you go to sleep just think of one thing that was great about that day. Maybe it was just that you had some really good food or something your child said or did. Just find it.

Always look for the light because it’s always there, sometimes it’s just a little harder to find. To quote one of my favorite book series and favorite characters ever: “Happiness can be found, even in the darkest of times, If one only remembers to turn on the light.” – Albus Dumbledore

You might have some crappy doctors, but don’t keep them. If you feel like the doctor you are seeing isn’t helping you, find a new one. If you feel like your doctor isn’t listening, find a new one. The relationship you have with your doctors is going to be so important in your life now. So don’t waste your time on ones who aren’t concerned about your well being. Make sure you have an open-minded doctor. You need to have a long relationship with this person and the best ones are the ones who are willing to look outside the box. The ones who aren’t afraid of you because you have a condition but instead are interested in you and want to make your life as good as possible.

Do your own research. Don’t just trust your doctors to know what’s best for you. Join online support groups for people with your illness and learn as much as you can. Research the medicines they suggest. You may find information about treatments for your illness that your doctors haven’t heard of yet.

Most of all, just remember this is an unexpected detour and you’re allowed to mourn the life you planned. That’s normal. That’s healthy. But eventually you will have to get up, dust yourself off and start to live again. Your life will never be the same but that doesn’t mean it can’t still be amazing. On the days it becomes too overwhelming and you aren’t sure what to do, reach out to those who love you. Or find a therapist. Many spoonies see a therapist to help them deal with the loss of the life they planned and the stress of life as a chronically ill person.

But please, never forget that I’m here. I understand. I’ve been exactly where you are now and even if I can’t physically be with you, I’m always just a text message, phone call or a video chat away. If you need someone to vent to, cry to or simply to yell about how unfair life feels.. I’m here. I love you and I’m not going anywhere because when I was in your shoes, you never left me.

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7 Questions I Ask Myself Before I Blame My Doctor

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I’m stepping up to defend doctors.

When shit happens, we have a tendency to look for someone to blame. It’s human nature. With chronic illness, I see an overwhelming trend of patients blaming their doctors. Sure, there are some terrible doctors out there, but we need to stop generalizing. We want and need doctors on our team, and it’s incredibly counterproductive to foster a “patients versus doctors” environment. I’m pretty sure my doctor could kick my ass in a fight anyway.

It’s time to stop blaming the doctors by default. When I start to feel angry with my doctor, I ask myself these questions:

1. Am I recognizing how complicated my health is?

I am a great patient, but I also recognize I come to my doctor with a lot of weird shit. It would be great if she had all the answers, but I also get that she probably had never had a patient come into an appointment and say, “So, doc, I think I’m lactating. Like a lot. And I’m pretty sure that’s not normal.” Or: “So my little toe gushed blood for 36 hours straight.” 

2. Do I have realistic expectations for my doctor?

My doctor is not God. My doctor cannot grant wishes or perform miracles. My doctor is human. I don’t walk into an appointment expecting them to magically heal me.

3. Am I actually frustrated with my doctor?

Or am I just frustrated with the situation? Chronic illness sucks, even when you’re on good terms with it. Different symptoms can affect mood. Nausea makes me sad, pain brings out all the swear words, but mental fog and confusion make me straight up pissy. I’m usually confused enough that my insults aren’t even clever:

     Significant other: “I think this may be an overreaction.
     Me: “Well you’re an overreaction!” 

When I’m feeling the mental fog, I have to be really conscious of what I say and do, so I’m not taking that out on anyone else. I’m not always successful (sorry, Ryan…), but I can at least recognize and apologize when it happens.

4. Is the problem something I actually have control over?

If a medication doesn’t work or I have a bad reaction to it, that is not my doctor’s fault. How the hell are they supposed to know a certain antibiotic will make me throw up? All medication bottles come with warnings. Before any procedures doctors will often lay out the success rates and risks. If a surgery only has a 10-percent success rate, I cannot be angry with my doctor if it doesn’t work. They warned me. Even if it has a 99-percent success rate, I was still warned about the 1 percent.

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5. Am I taking responsibility for the things I can control?

Am I practicing good self-care? Am I eating a healthy diet and exercising as much as I can regularly? I don’t have to like it, but I should still be doing it. I will be the first to admit I hate exercising. It’s like the seventh ring of hell in my world. When I’m at the gym, I’m the one with the face that clearly says, “I’m only here because a team of medical professionals has told me I should if I want maintain my mobility. Don’t misinterpret my being here as a love for physical activity.” Am I doing my best to maintain a healthy weight? Am I taking medications as prescribed? If my doctor advises me to see a psychiatrist, am I going?

6. Am I recognizing that at least some part of the problem could be emotional or mental?

I know lots of people who become defensive when a physician recommends they receive help for a mental illness or emotional difficulty. Just because a doctor suggests therapy may help doesn’t mean they’re telling you it’s all in your head. Let’s face it, we could probably all benefit from therapy. I have a lot of physical health issues. I’m not naive enough, though, to think my mental health doesn’t have an impact on my level of physical functioning. There is no end to the data indicating that poor mental health can aggravate physical health problems. Rather than getting angry at my doctor, I give their ideas a try.

7. Am I being honest with them?

If I am lying to my doctor (and yes, not telling them the full truth counts as lying), then I’m really not allowed to be upset with them. Doctors need the full picture to be able to help me as best they can. Don’t lie about how much you drink. Don’t lie about drug use. Don’t lie and tell them you’ll take your medication if you really won’t. It’s not worth it. We all have things we’re not proud of or are embarrassed about (see above. I f**king lactated. And not a small amount. Enough to make it awkward when you’re a freshman in college in a dorm with community bathrooms. Turns out breastmilk can have some serious projectile).

A “no” to any of those questions means I should take a deep breath and remember it’s not my doctor’s fault.

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Why My Parents Are the Real Superheroes in My Battle With Illness

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When you think of superheroes you probably picture Batman or Superman or possibly some of the Marvel characters. What you picture probably involves super-strength, the ability to fly or shoot lightening out of your palms (does anyone have that power?) and all that other jazz that goes with saving the world. I can’t claim to be an expert on that type of superhero; however, I do know a whole lot about a different “brand” of superhero.

I, personally, have my own set of superheroes. When I got sick, we had no idea of the road that lay ahead of us, but my parents, as well as my little sister, have been by my side since day one and their superpowers continue to shine through. I’ve been sick for nearly four years, and over that time I have only become more dependent on them. Although I know the burden is heavy, my parents never complain about the extra role they have had to take in my life.

Team effort <3

I know what you’re probably thinking – they’re my parents, it’s their job to take care of their child. No parent expects their child to be sick. Of course it’s always a possibility, but who really thinks it will happen to them? I didn’t get really sick until I was 17 years old, so learning how to care for an almost adult child who is now completely dependent on you again is a huge adjustment.

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My parents go above and beyond what an average parent is required to do for a healthy child. Caring for me is almost a full time job, but both of my parents work full-time on top of caring for me. As I have witnessed through friends and loved ones, not everyone is lucky enough to have such loving and supportive parents. There is no rulebook or contract that binds parents to care for their children in any certain way, and to have two parents who go out of their way to care for me, even as an adult, makes me incredibly grateful.

When you become the primary caretaker for someone with a chronic illness, your life is majorly altered and there is essentially no time limit on how long your loved one is going to need to be cared for. Each person has different needs based on their illness and severity, but it is a big job both physically and emotionally. The role of caretaker is most often taken on by parents and spouses.

My mom is my primary caretaker at home. Every day she makes my tube feeds, preps my IV fluids, helps me with my medications (three times a day), heats up my heating pads a countless number of times and makes sure I have everything else I need. She also accesses my port every week, helps me wash, brush and braid my hair, does my laundry and helps me sort my medications each week. She often drives me to appointments and helps me keep track of my schedule. When I’m up for it, my mom also likes to try to take me on a little car ride or a short walk if it’s warm outside so that I can get out of the house for a little while.

Hospital selfies with Momma!

My dad is also a huge part of my caretaking team. He’s here for anything I need him for. He drives me to most of my appointments and makes tons of phone calls for me. He is a huge advocate for me when I’m unable (or too shy) to do it myself. He also loves to do anything he can to help me at home. I often come home from appointments or trips to a freshly made bed and vacuumed rug. He makes my feeds when Mom isn’t home and he is always ready to run to the store to pick up my gum or ginger ale if I run out.

Exploring Cleveland during a medical trip!

Being 21 and completely dependent on your parents isn’t ideal, but I’m extremely blessed to have parents who are willing to play this role in my life without complaint. I often think that being the sick one is in many ways easier than being the caregiver. Although I’ve been able to come to terms and learn how to cope with my own illness, it is often extremely difficult for loved ones to do the same.

Having to watch your child struggle on a daily basis and being unable to find any promise of improvement or recovery is an almost unimaginable pain and burden. I see my parents carry this burden and struggle with the weight of it every day. With every failed medication, each doctor’s appointment that goes by with no new answers and each month that passes with no improvement, there is more frustration, more disappointment. This, however, doesn’t slow my parents down – it only motivates them to work harder and push further. There is no end to their efforts to find answers and no limit to what they are willing to do to help my health.

My parents, along with many other full-time caregivers, are superheroes not because of any superpowers they have, but because they regularly sacrifice their own needs and desires for those of their patient. They are unconditionally devoted to that patient, and they work tirelessly to find the best care and comfort for them. My parents are not only my parents and caregivers but my biggest supporters and my best friends. I am so thankful to have them by my side.

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4 Things to Remember If You Know Someone With Memory Loss or 'Brain Fog'

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When someone develops memory loss, this doesn’t affect their intelligence level. Whatever their intelligence before the memory loss was, it still is. It is rude and hurtful to treat them as if their lack of memory about something equates to lack of intelligence. They’re the same as they were before their memory or cognitive issues set in. Treating them poorly will only upset them and make things worse.

They aren’t being lazy, neglectful, or noncompliant. They truly don’t remember! Saying things like “I just told you this a few minutes ago” or “Yes, we did discuss this last week” is not going to help anything, and can be quite upsetting to them. There’s something organic going on in their body that affects their ability to recall certain things. It’s not their fault; they’re not doing these things on purpose. They’re likely just as upset about what’s going on as you are.

Sometimes the impairment can come and go. Intermittent cognitive impairment can be very difficult to deal with. If your loved one gets a diagnosis of dementia or Alzheimer’s disease, receives a brain injury, has a stroke, or has any number of things that may lead to a permanent change in cognitive functioning, that can be hard to deal with at first. Usually family and friends are able to adjust to the new reality and learn how to deal with it better. When it’s something that comes and goes, however, it can be more difficult for people to understand. There are many things that can result in temporary memory loss or cognitive impairment. TIAs, also called mini-strokes, can cause stroke-like symptoms that include cognitive impairment, but this clears up after a time. Some people with migraine experience memory loss during their migraines and seizures could also cause temporary memory problems. There are many neurological conditions that could cause temporary memory loss while in the middle of an episode. There are also autoimmune conditions that can result in memory loss and impairment during flare-ups. For these individuals, they function normally most of the time, but experience symptoms only during “episodes” or “flares” of their condition. It is important for you to learn all you can about your loved one’s condition, and learn the signs of a new flare or episode so you can be prepared to help them out during that time.

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Fear, shame, and guilt can often be expressed as anger. Anger outbursts are common in people with memory issues. When someone is accustomed to being high-functioning, it is scary to them when they realize their memory is slipping. When people are scared, they tend to lash out. Family members often make the situation worse when their response is to accuse the person of purposefully doing something wrong. They may feel shame and embarrassment because of their lapses in memory and try to cover it up or blow it off rather than admit they’re having memory problems. When confronted, they can turn angry and also guilty about how their memory issues are affecting their family. How you react to them can escalate their anger. Becoming educated on how to interact with them in a way that is non-blaming and non-judgmental could help you not to escalate anything further. You owe it to yourself and your loved one to treat them with dignity and respect, especially in trying times.

Kristi King-Morgan is a social worker and psychotherapist with a trauma-informed and strengths based therapeutic approach. Kristi currently holds a position as a medical social worker and provides crisis intervention to patients and families, which includes psychoeducation and self-care strategies for patients with chronic illness, injury, and aging issues, and self-care strategies to families/caregivers.

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What I'd Like My Church to Understand About Chronic Illness

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Last Sunday, my husband and I went to church. We don’t attend as often as I’d like, but when we do go, I always feel a little self-conscious. I have several invisible illnesses, which means you can’t always tell when I’m not doing well. I started thinking that perhaps I can help others to see that they’re not alone, and maybe I can explain what someone with chronic illness might experience so church and staff members can understand a bit more.

We are those people. We sit in the same place nearly every time we attend church. Our seats are pretty close to an exit – and no, this isn’t so we can make a quick escape. There are times when I have a coughing spell, GI issues or just need to walk around, so I find it easier if we sit near an exit. So please don’t think I’m anal when I make a beeline for “our seats;” their locations have been well thought out.

church music

Our church has a great music ministry. We probably sing for about 10 to 15 minutes every Sunday (no, I’ve never actually timed it). In my past life, BS (before sickness), I really enjoyed this. I still enjoy listening, but I’m not able to participate. I can’t stand in one place for more than five minutes, and some days even that is too much. If I do, blood starts pooling in my feet and legs which causes pain, numbness and also for me to become weak and feel faint due to the blood leaving my brain. So I usually stand for a few minutes, then I sit. I don’t normally take my cane or any other mobility device to church, so most people don’t realize I’m chronically ill. I’m sure a few people have wondered why I don’t participate as I look relatively youngish and healthy. Besides not being able to stand, I’m unable to sing for very long (family members might say I’m unable to sing period.) I must really look rude! I can’t sing because I don’t have the energy or breath to do so. We haven’t quite figured out what the cause of that is, but it’s perhaps a symptom of dysautonomia. So, please understand why I don’t participate in this part of worship. It’s not because I don’t want to, it’s because I’m unable to.

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I don’t always close my eyes and bow my head to pray. Some days I’m prone to spells of vertigo. These can be set off by a change of position in my head (usually looking down) and/or by me closing my eyes. So, I usually close my eyes ever so slightly but don’t bow my head during prayer. I know there are probably many people who aren’t ill who don’t bow their head, but most do in church and, in the past, I always did. So please don’t think I’m rude when I don’t appear to be praying because nothing could be further from the truth. I can pray in many ways.

I’m not always real social before or after church. In fact, I may come across as being rude. It sometimes takes me a great deal of effort to get ready for church and I may not have slept well the night before or I may be in a lot of pain. Any number of things can cause me to retreat into myself. I’m normally a pretty social person, but when I’m having a bad day, I tend to steer clear of people. I may not get up and shake hands during greeting time during the service, I may take another exit out of the church to avoid the crowd and I may spend more time than needed in the restroom waiting for the lobby to clear. So please understand: it’s not you, it’s me. It’s my way of coping with all of my many symptoms in the way I know best.

My church attendance may be sporadic. This includes both church services and other church-related groups or activities. You may see me out somewhere on a Saturday night, but come Sunday morning, I’m too sick to go to church. My symptoms can change that fast. I am so grateful that we have an option to watch services live online every Sunday. No, it’s not the same as being there, but it does help me to feel as if I’m still a part of my church. I’ve joined a study group that meets on Friday mornings; I’ve missed several times because of not feeling well. I feel bad about my poor attendance because I worry that other members of the group will think I’m not taking it seriously enough and that I may be taking the spot of someone who could attend more regularly. So please know that I do want to be there and that I need to be a part of a group.

thinking of you

The other day, I got a very nice card in the mail from my church’s women’s group. The card really did cheer me up on what was a very difficult day. So often those of us with chronic illnesses feel left out. There are meal trains, greeting cards and visitation ministries for those who have been hospitalized, had surgery or had a baby, but those of us in this category of always-being-ill aren’t always remembered. Of course, that’s not always the case, but from my reading and conversations with others who are chronically ill, it happens more than it probably should. So please remember those of us with chronic illnesses – a card, a phone call and/or a meal would be so appreciated.

I hope I have helped some of you to feel understood and helped others with understanding. The support and understanding of the church is so important to believers who have a chronic illness. For many of us, it’s the one place where heartache meets hope and where those who worship with us can really make a difference in our lives.

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9 Ways to Keep the Romance Alive When You're Chronically Ill

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Hey there, hi there, ho there!

So in my last blog I discussed how sometimes people forget that life for the chronically ill person is far more difficult than a carer’s. I briefly touched on how relationships can dwindle from lovers to a carer-patient relationship when your signifiant other is acting as your carer. So, with that in mind, let’s look at some ways you and your partner can keep things romantic even when chronic illness tries to intervene. A lot of the things I’m going to talk about can be applied to any couple that may have let the romance die out a little.

1. Kiss.

Kiss gif

When you’ve been with someone a long time, sometimes you genuinely forget to kiss – even if you’re not chronically ill.

“Even just a quick touch of the lips.”

When you’re so busy concentrating on your illness and/or family life, it can be easy to forget to just stop and have a moment together.

2. Do something together at least once a month.

Whether it’s getting in some alcohol-free wine/beer, watching a romantic movie or having dinner together, make the time to spend a couple of hours together not talking about family, the illness, etc. Even a gentle stroll on the beach or through the woods while holding hands can be just enough to keep that flame a-flickering.

MIGHTY PARTNER RESOURCES

lady and the tramp sharing spaghetti 3. Go back to where you first met.

If it’s possible, go back to the place where you first clapped eyes on each other. Try and remember how you felt that day. Recreate your first date. Go to your friend’s house and have them help you get ready.

“Have your partner pick you up or meet you at the place where you had your first dinner/drink together.”

4. Do something nice for each other.

writing a love letter

It doesn’t have to be a birthday or a special occasion to do something nice for your significant other. It doesn’t have to be a grand gesture or anything expensive. Write a love letter and leave it somewhere for them to find. Make a playlist of all their favorite songs or songs that remind you of them. Run a bubble bath, light some candles and let them have some time to themselves.

5. Massages.

Get some nice oils, light some candles and help get those pesky knots out. Please do be careful if you’re massaging someone with a hypermobility syndrome – the last thing you want on your romantic night is to end up in the emergency room!

6. Go on a weekend break/holiday.

If you’re like me and are seriously affected by low pressures and crap weather, you might appreciate getting away to somewhere warm (but not humid). A nice week away to the Mediterranean can give you and your partner a break from pain and all the other symptoms associated with your condition.

vows gif 7. Renew your vows.

You don’t need to recreate your wedding day – unless you want to. You can simply organize to renew your vows with your priest/registrar/humanist. You can do it alone or just invite your close family and friends.

8. I love you.

Those three simple words should be said every day. Whether it’s first thing in the morning or last thing at night.

“Let your significant other know that they are loved.”

Just like kissing, sometimes it can be easy to forget to say it. Especially when brain fog is a factor of your illness. Set a reminder if you have to!

9. Sexy time.

sexy time gif If you can do it and want to, go for it. Ninety percent of the time, us spoonies don’t feel sexy or attractive. Sometimes you gotta make yourself look good on the outside to help you feel better on the inside. Help yourself feel sexy by having your hair/makeup done. Have a relaxing bath, shave your legs (if you want), get into a nice nighty or pajamas. Do whatever makes you feel good about yourself. Sometimes after all that effort the last thing you want to do is the horizontal mambo, but if you still have some spoons left and you’re not in too much pain, use that last bit of energy to make lurve. Remember, you don’t necessarily have to “go all the way” – sometimes some heavy petting can be just as nice.

Till next time,

The Zebra Mom

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