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Posted on 10. July 2014

“It’s Not You, It’s Me”: Are All Friendships Worth Pursuing?

By Paulina Brooks

Like most of us living with a chronic illness, I discovered all too soon following my diagnosis of mixed connective tissue disease that one of the biggest sources of suffering was the loss of friendships. It took years to understand that those around me didn't have to deal with a life-threatening disease - but I did. As such, it was their prerogative to feel uncomfortable around me, to fear their own mortality and to feel neglected in their own way when I was no longer able to keep up with social commitments.

So, when I recently met a young woman with CIDP (chronic inflammatory demyelinating polyneuropathy, one of the many conditions I live with), it was not surprising that I was ecstatic. She not only understood what I was going through, but she lived with it every day. Sadly, however, I quickly realized that having a rare illness in common is not the magic glue that makes new friendships stick. An hour into our conversation, and as we both watched our respective bags of intravenous immune globulin (IVIG) slowly drip into our veins, she had shown a very needy and unpleasant personality that left everyone around her rolling their eyes. Every word was as negative as her disposition. She had chosen to become her illness, and admittedly, she wanted to give up. Bearing witness to such behavior left me overwhelmed, wondering if any amount of reassurance would ever be enough to calm her down and show her I cared. Still, I tried to find out who she was as a person to no avail.

We all have a basic need to connect, but this was an unhealthy version of craving contact fueled by helplessness and fear. Living with a debilitating illness can be isolating, leaving us eager to talk to someone who can truly understand us; however, being sick doesn't mean we can indulge in exaggerated and persistent complaints just to convey how lonely we feel. That attitude is sure to backfire, and we must be careful not to alienate the precious people who stood by us, including our medical team.

In this case, our disease is indeed the same, yet our responses to treatment are as different as our respective attitudes. To what extent should we compromise our own emotional wellbeing in order to help someone who might not want or be ready to be helped? Perhaps her personality before the illness wasn't much different. I don't know; but what I do know is that a life-altering event doesn't change our character - rather, it reveals it.

How do you protect yourself against the "Debbie Downers" and "Chatty Kathys" of the world? How would you have handled this situation? As for me, the next time I encounter an overly inquisitive fellow patient, I'll be sure to set boundaries and protect my right to privacy, even if the latter is an almost impossible task in a setting where patients sit less than two feet apart. But that, along with infusion room etiquette, are topics for another blog.


Comments (15) -

Deb Konrad
4:37 PM on Thursday, July 10, 2014

This really hits home...I recently left a couple of online groups for this very reason...I like to offer support to others who are dealing with the same issues, but have found that often times, a lot of the people who participate in theses groups are people, who are chronic Debby Downers, or just plain Drama Queens...It gets to be exhausting and depressing dealing with people like that. You have to do what is best for you...for me it is living my life the best I can while dealing with a sometimes difficult situation. I prefer to focus on my good days, and not dwell on the bad...I really need people in my life who do the same.

4:53 PM on Thursday, July 10, 2014

My "favorite"comment from people who don't understand my son's PIDD is Dr. Oz suggested xyz for better health. You should try it.  I know it's not Dr. Oz's fault people don't realize 1) He is selling products 2) The details of my son's illness, but I was really happy when he was called before congress for blurring the lines between Dr and peddler.  

10:46 AM on Friday, July 11, 2014

I've met the same sort of people when I get my IVIG infusions. The ones who go on and on and on about how awful their lives are. I am a good listener, but this type of thing is beyond my endurance level. In cases like this, I just quit nodding, and pick up my book - basically tuning them out. Pretty soon most of them get the hint. The ones who don't - I just keep on ignoring them, and let them assail someone else in the room.

7:56 AM on Saturday, July 12, 2014

Thank you so much for taking the time to comment on this topic! I decided to write about it because as all of us know, that type of behavior is something that's more common than not - whether we encounter fellow patients online or in a hospital setting.  In fact, yesterday I just finished my 5-day course of IVIG for this month and although I managed to avoid this person, it was disturbing for everyone at the infusion center to witness her have a complete meltdown a few days ago. Her reaction was so disproportionate to the small issue that triggered it, that even the staff was astonished.  As much as we'd like to help others, I agree with all of you on remaining positive and enjoying the good days. There is so much joy in living the best life we can!  

Deb Konrad
1:31 PM on Sunday, July 13, 2014

I think those of us with any type of chronic illness, could probably write a book on this subject...I hate it when I encounter someone who wants to compare their journey with yours and believes they have the worst story possible. Since I also have Lymphoma I get it on 2 fronts...it can get overwhelming at times...and ask me about the stupid things people who aren't dealing with cancer or any other chronic condition, say to you. That is another book...

Linda Thornrose
3:06 PM on Sunday, July 13, 2014

I agree with you...being positive is so much easier!  I am more thankful than ever that I get my infusions at home!!  What really disturbs me is when folks on a support site or blog will post such angry rants at people like our being sick is someone else's fault...that is so disheartening, rude and embarrassing because most of us don't feel that way.  I don't want to get negative attention, it only brings me and those around me down.  I choose happy!  I sure enjoy reading all of your comments and know I am not alone.  When I do have a down period, it encourages me.  Enjoy the good days when you have them, right Paulina!  Love it...I love the joy...just look around.  There are so many more nice people and things to see in this world, open our eyes and see.

Linda Thornrose
8:34 AM on Monday, July 14, 2014

Agreed, Deb.  Those "Debby Downers" just don't realize the negative impact they have on others.  I just ask God to help me pray for them as they are trapped in a world of sadness that isn't necessary.

1:30 PM on Monday, July 14, 2014

I am so glad we have this forum to come together! Although I know that having a positive outlook is not going to cure my illnesses, concentrating on the good things does help me get through it all.  In that, I am very grateful for having the opportunity to interact with all of you and learn from everyone's experiences.  Deb, I thought of your comment today about the stupid things people say because I was speaking to the RN assigned to my internal medicine doctor this morning and he questioned why I needed labs "if I looked so glam"...and he said so with a statight face! But the "funniest" thing was when he suggested avocado might work better than IVIG to repair my myelin sheath! Now that deserves a good laugh ;)

8:14 AM on Tuesday, July 15, 2014

Thanks for the great discussion topic Paulina, I find it is important to listen whether the person is really sad, upset, or positive, because they help me better define myself.  I am happy I could listen to the very "down" person because it made them feel better and helped me realize I am not so down and maybe even better off.  We all deal with our illness in different way.  It is a difficult journey but the people along the way make it more interesting.  Now your suggested topic for another blog post on infusion room etiquette is a good one.  I think we need to start a list!  Any suggestions how?

Linda Thornrose
12:09 PM on Tuesday, July 15, 2014

I am no help on the infusion room etiquette as I am blessed to have my infusions in my home, thank God.  However, I agree with listening to those folks who are down.  My criticism is of those who are angry and blame everyone for their illnesses...it is sad, but some of the hateful things that are sad bothers me.  Maybe I need to find a better way to deal with that as I know everyone's emotions are valid.  It is just something that gets to me when the anger results in such hateful and mean-spirited comments.  I guess it could be just a phase as I know we all at some point have some anger when we are first diagnosed...I think mine was more at the illness, though.  Any comments from anyone that might help me?  I don't want to be disagreeable.  Thanks.

Deb Konrad
1:35 PM on Tuesday, July 15, 2014

Since my cancer diagnosis 6 years ago, I have found that I must "filter"...that does not mean that I am being insensitive to other people's suffering, it just means that I am attending to my own needs..that is not selfish...as my oncologist has told me, you can't be all things to all people...and that I must attend to my own needs first. As women, society expects us to be nurturing...and as a mom, the realization that I needed to tend to my own needs first was very difficult.  My balance with helping others has been one on one support through 2 cancer groups...I have done it 4 times...it does not involve a huge commitment of time on my part, and it gives me time to not be thinking about my problems 24/7...we all have to find our own way to cope, there is no "right" way. I have had people tell me that I "must" participate in certain cancer events...the only thing I must do is take care of me....

6:39 PM on Tuesday, July 15, 2014

I always remember the flight attendants telling us "put the mask on yourself first, then help the person next to you"...that speaks volumes when it comes to caring for yourself in order to help others...not the other way around!  Well said, Deb!

8:36 AM on Wednesday, July 30, 2014

I've learnt  hard & fast especially in the community,what the protocols are that protect my well being.Initially,I thought it was similar to the 12 step fellowship that has been a life saving force for healing in my life for some decades before my PID issues.Wrong....having a similar gene or illness doesn't give me more in common than one type of shared experience.
I need to always surround myself with not only experience,but strength,hope & a connection to something that is bigger than my day to day struggles. Like others,I'm infected easily by toxic personalities & attitudes.My only focus,must be on helping myself stay buoyant as we all have our own paths to walk. I have especially grown to count my blessings as I've been exposed to attitudes in others that are not only unhelpful to me,but are actually harmful to my well being,energy & peace of mind.

Linda Thornrose
4:22 PM on Wednesday, July 30, 2014

Well said, Mara!  I have to agree.  Sometimes it is hard, but in the end it is beneficial to the patient and their loved ones.  God bless you.

10:06 AM on Friday, August 01, 2014

I look at it this way.  Yes, of coarse I am sad about having to deal with this immune deficiency because I have to adjust the way I and my husband live our lives.   It could be a lot worse. So I have made a choice to not feel sorry for myself and not dwell on it.  I want to live a happy life. I infuse weekly.  I try to only think about it that day.  Then the rest of the week I'm a happy girl.

Mara,  I agree with you. I also try to avoid people with "toxic personalities & attitudes".  It brings me down.  

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