How relationships MAY change when you are chronically ill.
Finding out you are chronically ill, is challenging at best. But, there are other things you may find more hurtful. Please do not take this the wrong way. I want you to find a positive even in the event of a negative.
Here is a (by no means comprehensive) list of things I have experienced since finding out I had stage III lung disease. They are in no particular order, but I feel they are important to talk about. Knowing what to expect, makes the disappointment hurt a little less.
1. Your friends and family may doubt you.
Google "invisible illness", it is any disease or defect that is not visible to other people. Because you look healthy, or "normal" people may not believe you are really sick. They may be down right nasty about it.
Now, there are ways to handle this. And, I am not here to tell you what is the correct way. Each person is different, and will need further explaining in different ways. I am very sarcastic, and TRY to be upbeat about my situation. I joke, I laugh. But, I will not bow down and supply anyone with all of my medical records to appease their appetite for confirmation.
2. People will be mad at you.
They may blame you for causing your illness.
- You should have gone to the Doctor sooner!
- You shouldn't have smoked!
- You smoked pot when you were a teen!
- You work too much!
- You are just too lazy!
- You drink too much!
- You should have exercised more!
- You shouldn't have eaten fast food!
That is okay...
They either LOVE you and just need to place blame somewhere... A natural reaction to something they see as a terrible or tragic situation.
OR, they are selfish and have little compassion for others. You decide.
If you know they are just upset and love you... HUG them tight! This hurts them too.
If they are the selfish person, just avoid them. Seriously, you don't need that stress! Just limit contact, don't call them, let them call you.
3. Your friends and family relationships will change.
They are going to love you more, try to spend more time with you, help you more... Take it! You need it, and those precious moments you will be spending with them will make up for the next group of people...
The ones that avoid you. These people can't deal with watching you go through this. That is okay! Just make sure you are not mean about it. Yes, it hurts. It will break your heart into a million pieces when some of these people start to avoid you, stop inviting you to things, don't call or come visit. It is their way of dealing. Let them have it. You need to keep happy, positive people in your life and close to you!
4. You will need to apply for Social Security Disability right away!
Don't wait like I did, until all of your savings is gone. You need to get medical coverage and financial assistance as soon as possible. Some medications can run into the hundreds + and procedures can run even higher. My medications run about $1300 a month. That doesn't include rental of my oxygen concentrator, or nebulizer.
I have problems with my hands, I have to wrap them every day, and every night. The wrap costs about $5 a roll. So I spend about $20 a week on those, $80 a month.
Then there are many OTC medications I need to keep on hand as well. A decongestant, cough expectorant, cough suppressant. VITAMINS! You need to take a good multivitamin, every day! I also supplement with B-complex before bed.. It helps me sleep and wake up energized.
So about $1500.00 a month just on medical expenses. There is a plethora of other supplements you may choose to use for a variety of reasons. That adds to your expenses. You NEED to use what is safe, doctor approved, and actually benefits you. Melatonin, St. Johns Wort, and so many others are beneficial and I may write a post about these at a later date.
Keep record on EVERY appointment! Read Filing for Disability below...
See my other posts:
Filing for Disability?
COPD Support Groups.
My personal story:
Everyone was in denial. The more I needed help, the more my family pushed away from helping me. No one wanted to talk about my illness. Those people that I was the closest with, would listen to me, but not really hear me. And of course, those people were not chronically ill. So they could not really relate to my thoughts, feelings, or situation.
Many friends doubted that I was even ill. Thinking I just up and quit my job because I just woke up one morning and decided I didn't want to work anymore. This really hurt. I had been so consumed by my job, and a new baby, a teen, an adult child and my grandchildren, that I had been guilty of not putting much effort into my relationships... So, I can see how they may have viewed me as being too lazy to pick up the phone, or too lazy to text...
But, I have always worked full-time + (40-80 hours), and often had a second job (15-25 hours) to help make ends meet. I was the friend THEY came too when they were short on their bills, needed money for gas, groceries, diapers, formula, and what ever else they may need. Now, that I needed help, I was being insulted.
One "friend" had that audacity to say she would not help me at all, because I made myself sick! Really? I have intentionally bought "junk" from their business to help them get their bills paid because they really needed the money. Tens of thousands of dollars... I am not used to asking for help. I am the helper... This really hurt.
Some people stopped inviting me to gatherings, when I missed a few because I was not well enough to go to a few that I had previously been invited too. It used to be traditions for me to take my friends out on their birthdays and they did the same for me... Until I got sick. Come on guys! I can go out once a year! So, I make my own parties now! With my kids, and grand kids, my siblings and father. My adult kids always do something special for me, a nice dinner and cake with family.
When I realized that I was pretty much alone in my journey with a chronic illness, I joined many support groups online. People that can really relate to me, my situation.
I guess the takeaway from this post should be simply to be kind to one another! Always be supportive, and really LISTEN when your loved one is ill. They need you more than ever!
For anyone who is not chronically ill that may be reading this...
Please include your newly ill friends and family... A simple invite has never hurt anyone. A short text, IM, or email message asking "How are you doing?" or "What have you been up too?", would be great ways to stay in touch. If you are in their neighborhood, stop by! Just to say HI! And, if needed, offer to help with something they are not able to do well. Throw in a load of laundry, empty the dishwasher, vacuum, what every might help them out... Remember all the joy they have brought to your life, the times they helped you out, and how they desperately wish they could still be there to help you change a tire, or pick you up from the airport... We miss helping you!