pcos

Friendship and Chronic Illness

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Those of us with chronic illness know all to well how our disease{s} have changed our social lives.

We often don’t feel up to social visits – we barely survived the week, our weekends are for recouping. Not to mention that we have stacks of medical bills, so our “fun” budget may be limited. Those of us with chronic illness often prefer to be nestled at home, on our couch, resting up before facing another week.

In my early twenties, I had so many girlfriends. I was footloose and fancy free, a social butterfly if you will. As my Endometriosis and PCOS symptoms began to rage in my late twenties, I began disengaging from a lot of social activity out of neccessity. It didn’t take long and many friendships weeded themselves out of my life.

Now, at 34, I’ve learned that at times I have to back out of or say no to social activities. It isn’t that I don’t want to be there with my friends (I do!), but I know that if I don’t rest when I’m having a bad day or flare up, my week will be shot. I only have so much energy and when it’s gone, it’s gone. My weekends are for recharging my battery.

Having severe anemia and hypothyroidism only complicate my low energy levels. When I say I’m tired, it’s the real deal people.

The guilt I feel when backing out of a planned social activity is immense. I struggle to make the call or send the text to my friend for fear they will be angry with me or worse yet – hurt by my absence. I have felt the coldness in their responses and I just know I’ve disappointed them. And I can tell you my friends, that feels worse than my pain. The pain of tissue that grows in my body and attaches to organs, the pain of cysts bursting in the middle of the night, the pain of multiple surgeries, the pinching, burning, stabbing, aching pelvic pain is no match for the hurt I feel when someone I love has little to no empathy for me. That my friends is pain. 

This past weekend is a perfect example of how my chronic illnesses limit me. I hit the road at 6:15 am on Saturday morning to meet my friend in Green Bay for a boot camp lead by Peter from the bachelorette 🌹. I was PUMPED. When I woke up I knew it was going to be a rough day. I had pain and was feeling lightheaded. But I wasn’t about to miss yet another event, no sir!! By 6:45 I was nearing Pembine and had to pull into a gas station. The pain was so intense I thought I had to vomit. I went into the gas station, did my thing, and went back out to my car and literally sat there for about 15 minutes before I could even bring myself to tell my friend I was probably not going to make it. Probably? Yes, probably. I was trying to see if maybe I could still make it. The average person would not hesitate to go home with pain like that – many would head to the ER! Not me. I was fearful of upsetting my friend.

When I text my friend, I was met with nothing but kindness and empathy. No judgment, only concern. I’d like to say this is the typical response, but I’d be lying. Many people in life could take a page out my friend’s book.

Often my friends will say that it’s okay, but I can tell and I just know they are disappointed in me. They are unusually brief in their responses. I just know. I know they are upset. And that is what breaks my heart.

So how can you best support your friends who have chronic illness? Expect that they may cancel – have a back up plan so your friend knows they didn’t ruin your day and you’re still having fun. Respect your friends need for rest and believe them when they share with you that they are not up to it. Do not take this personally! It literally has nothing to do with you and everything to do with their disease. Offer a response that shows empathy and compassion. Offer to go to them! Go sit with them on their couch – chronic disease is lonely. I’ve never felt more alone than when I was supposed to be with friends and instead I’m all alone in my bed in pain. Don’t be afraid to go into the trenches and just be with your friend! 

With that being said, friendship isn’t one sided and it’s okay to expect that your friend still contribute to the relationship. Allow them to show you support in other ways – frequent texts or phone calls allows them to continue to be connected to you, even if they can’t see you in person.

At the end of the day, friendship is a two way street. However, you have to be willing to meet your friend half way. Just because this relationship is different than your other friends, doesn’t make it less valuable. Be willing to be creative, extend the olive branch, be kind, and let your friend know you still love them no matter what! Trust me, it makes a world of difference. I’m forever thankful for those friends who have shown me the above and I’m learning to let go of those who don’t. Friendship is about connection. We are bonded by our experiences and our mutual love and admiration for one another. That is worth preserving.

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Welcome

Baby Brave

Family39713FE4-4E12-4D2E-AB06-847CB7F78A41 Baby brave. Baby, what!?! 

When you are a woman with endometriosis and PCOS, you are well aware of your fertility limitations. When you are pushing 34 and despite multiple treatments and surgeries for said conditions you have yet to conceive and carry a pregnancy, you are very aware of your risk of infertility.

I’ve been able to successfully place a shield between myself and my fertility reality for many years with the hope of “someday”, but as time goes on, and with the recent roaring return of my symptoms, my shield is less and less effective. I know that my window is closing and that my options are more and more limited. The reality of a hysterectomy {which was first presented to me almost 7 years ago} is at the forefront. I fear my body will never experience pregnancy and instead I’ll be back on the operating table … again. But this time it won’t be to preserve fertility, it will have taken it away. I’m not sure if I’m brave enough to face this yet.

On Saturday I had an opportunity to go see my best friend’s beautiful new baby. All week I was feeling nervous – the last thing I want is to show anyone that holding another person’s baby can feel like my heart is being ripped out of my chest. I have to almost puff myself up before I go to baby showers or children’s parties so that my shield is strong – in order for no one to see how weak I actually am.

On Friday my period came early – which is another reminder that I’m not well again. Beyond this, my emotions are raw during this time. By the evening, I was thinking of a way to cancel without being an asshole. I spent an hour crying and feeling sorry for myself – like ugly crying. I went to bed feeling dejected – like who is 1) afraid to go see a beautiful baby and 2) how can I be so selfish as to not want to go celebrate with my friend? I decided to pray about it and let it marinate in my soul for a while. Feeling anything related to infertility is not something I do, so this is new and scary. But I wanted to be brave.

On Saturday I woke up still feeling sad, but knowing that I needed to be brave. It’s hard to explain how I can both be simultaneously over-the-moon happy for someone who has just had a child while also feeling profound emptiness. But at the end of the day, I refused to let my sadness taint my happiness for my friend and her family. I refused to not show up for someone who has always shown up for me. So I made the choice to be brave.

I held that beautiful baby for darn near an hour. I couldn’t look at my husband much during that time, because I knew that would make things more emotional for me. I enjoyed the visit and celebrated with our friends. My heart fell full for my friend with a small pocket of emptiness – so instead of burying my feelings I acknowledged them and let them be. I looked at my husband and stepson and felt grateful for the family I do have. 

While I can’t predict what my future holds, I’m going to allow myself to feel my pain and be brave enough to acknowledge and own it. This isn’t easy. Life isn’t easy. But it is in trusting my journey and having a brave heart that I can survive and thrive each step of the way.

So this weekend I’m proud to say I was baby brave. I let my shield down and allowed myself to feel … to feel happy, sad,  jealous, alone, supported, and loved all at once. Being brave doesn’t mean you have to be perfect, it just means you show up, for both your loved ones and yourself. Bravery is vulnerability and courage is strength in weakness. Breaking down my shield has been scary and healing at the same time. I know it won’t be easy, but I’m going to continue on this path and trust I’ll figure how to navigate my way each and every day. Here’s to being brave!

 

 

Silver Lining Logic

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Often times people will tell us folks with chronic illness, there is “always a silver lining” as a means to provide us with comfort. I can tell you that I used to want to tell those people to take a flippin hike because literally you have NO idea people! They wanted me to believe silver lining logic. I wanted them to buzz off.

I used to think the silver lining metaphor was a bunch of malarkey honestly. What good is there in suffering? I would be thankful to survive whatever health crisis I was enduring but I wasn’t thankful FOR the crisis. I felt burdened by it. Angry that I had to experience it. Jealous of healthy people. Lonely in my fears. Silver lining logic was lost on me.

However, following an extensive surgery for my endometriosis and PCOS in the summer of 2016, I started to see things differently. It was a six week recovery and let me tell you – the first few weeks were torture. I couldn’t sit on my bottom, could barely stand up straight, and had to wear an adult diaper for the first two weeks because I was bleeding so much. I won’t get into details about my operation, but I will tell you I was miserable. Embarrassed. Sad. Pissed. I felt broken and like “why does my body hate me so much?”. I felt thankful for my family and friends, but I also felt lonely in a strange way. Lonely because I couldn’t tell anyone just how much I grieved being a “normal” and healthy person.

When I would attempt to tell people where I was REALLY at emotionally, they would say things like: “well at least they got all of the endometriosis” and “you should be glad they saved your ovaries” and “it’s only up from here”, and my personal favorite “at least it’s not cancer!”. All well-intentioned statements filled with silver lining logic. I wasn’t ready. I was lost in my own loathing.

Following my surgery, as I lay recovering and bored out of my mind, I started receiving messages from women telling me their stories. Some were women I knew personally, and had no idea suffered from chronic health issues. Some were women I’d never met. Each came to me with words of encouragement fueled by empathy and a sisterhood I cannot explain. We bonded together and I began to realize I wasn’t alone. In fact, there was a tribe of strong-ass women feeling just as broken as I was.

In those weeks following surgery, something clicked for me. Was it that I magically saw this metaphorical silver lining and lost all my resentment related to my chronic illnesses? Definitely not. But I did see that there was something magical that I experienced as a result of my suffering. I realized how connected I was to other women and I learned that in some way we could help each other find strength. There was a power in my story and a gift in the ability to share it.

A year in a half later here I sit. I still have moments where I’m ticked that I have these conditions. But there are many more moments where I feel a greater calling to connect with other women like me. That our strength is in our stories. That maybe there is this silver lining people speak of. But it’s more than that. It’s a line that draws our hearts together and connects us to one another in a beautiful and profound way.

And for that, I’m blessed. And cursed. Tragic. And magic. Connected. And therefore, powerful.

Xoxo,

Kelly

finding magic

WelcomeWelcome to my site! This is my first “official” blog post 💗

I’ve created this space as a little nook for those of us struggling to find meaning in suffering, strength in weakness, joy in sorrow.

Living with chronic health issues can feel dark, lonely, and dare I say, tragic. But in that tragedy, there is magic. I know, I know. How the hell do you find magic in something that feels tragic?

The magic is something you have to create – and it lives within you! Most people get a cold and they think their world is crashing down, but not us! We deal with pain, stress, and anxiety every day but yet we continue to show up when most would not. We show up to life. We get out of our damn bed (most days) and still contribute to our families, our communities, and the world. We have a secret sauce, a strength that many cannot even imagine. If you ask me, that’s magic!

While you are not Houdini or Cinderella’s fairy godmother, you do possess something just as powerful (if not more so). You possess the unique ability to overcome obstacle after obstacle with sheer willpower. But there is more. There is your magic. The something special you have in your heart that makes you strong in the face of adversity. It gives you the power to look at each new challenge square in the eye and know that day by day, you will not let it overtake you. You will not be overcome.

It is time to celebrate this magic that lies within you! You are a warrior, a hero, a force of nature. You are pure magic.

finding magic

WelcomeWelcome to my site! This is my first “official” blog post 💗

I’ve created this space as a little nook for those of us struggling to find meaning in suffering, strength in weakness, joy in sorrow.

Living with chronic health issues can feel dark, lonely, and dare I say, tragic. But in that tragedy, there is magic. I know, I know. How the hell do you find magic in something that feels tragic?

The magic is something you have to create – and it lives within you! Most people get a cold and they think their world is crashing down, but not us! We deal with pain, stress, and anxiety every day but yet we continue to show up when most would not. We show up to life. We get out of our damn bed (most days) and still contribute to our families, our communities, and the world. We have a secret sauce, a strength that many cannot even imagine. If you ask me, that’s magic!

While you are not Houdini or Cinderella’s fairy godmother, you do possess something just as powerful (if not more so). You possess the unique ability to overcome obstacle after obstacle with sheer willpower. But there is more. There is your magic. The something special you have in your heart that makes you strong in the face of adversity. It gives you the power to look at each new challenge square in the eye and know that day by day, you will not let it overtake you. You will not be overcome.

It is time to celebrate this magic that lies within you! You are a warrior, a hero, a force of nature. You are pure magic.