How to Interact with a Person who has CFIDS

I found out that a more accurate name for CFS is CFIDS (Chronic Fatigue and Immune Deficiency Syndrome) so I will be using CFIDS instead of CFS from now on.  

After being diagnosed with CFIDS I have gotten many questions about it.  It is totally fine for anyone to ask me whatever questions you have, but it's hard for me to come up with answers because of a lack of energy to talk about it and the brain fog makes it really hard for me to think in the moment.  Because of that, I am going to explain some things about CFIDS that I have been asked a lot.  If you are learning about CFIDS on your own, the best place to get information is CFIDS Association of America.  I looked at the advice the site gives friends and family for helping someone who has CFIDS, and it says exactly what I was thinking but couldn't explain!  Just so you know, I will probably be posting/copying a lot since it is very hard and exhausting to come up with my own way of saying things. I have highlighted the advice from the site, and my comments are in black.

• CFIDS affects every aspect of an individual's life.  Be aware of the emotional struggles that a patient goes through. Definitely...Every day I realize there are things that I probably won't be able to do again, and it makes me very sad, frustrated, and angry.  One part of treatment is writing out things that you are upset about and finding something good to replace it with.  I will be doing that later this week.  Around others I try to be as positive and uplifting as possible, but there are many times when I'm alone when I definitely have trouble getting a hold of my emotions.  Please don't assume that nothing about this upsets me and that it hasn't changed everything I thought my life would be like.  It has.
• CFIDS is an invisible illness, meaning that there are few obvious signs that the patient is ill. Although the person may look "normal" when you're together, you may not see the relapse that follows activity.  Many patients want to function at their best when with friends, but privately pay a price later.  Exactly.  Many people look at me like they don't believe I'm sick because they can't see it.  They often tell me that I'm boring or lazy for not wanting to continue to hang out with them or even continuing a conversation.  This is frustrating because I would love to do those things, but I know that if I do, I probably wouldn't last more than a few minutes, and I would be sick for weeks after just one night of fun. Also, it may sound strange but carrying on a conversation is really hard for me. I can listen really well when someone is talking, but responding can be difficult.  It takes so much of my energy to talk, and talking for more than a few minutes makes my lymph nodes in my neck swell more than usual.  It then becomes very painful to talk.
• It is difficult for CFIDS patients to make advance plans and plans often must be canceled at the last moment.  Because overexertion leads to relapses, previously enjoyed activities must often be altered or given up.  This places a tremendous strain on partners and friends.  Accept that you may not be able to enjoy the same activities with the patient as you used to.  Try to keep plans and expectations flexible to accommodate unpredictable symptom changes in the patient.  I'm sure many of you have experienced a time when I cancelled on you at the last minute.  I know this happens a lot, and I hate it.  I hate that people can't count on me to do what I say I will do even though I know it's not my fault.  I hate hearing the disappointment in their voice even though I know they understand and they just want to spend time with me.  This is one thing I think will take me a long time to get used to.  This is also why I often avoid making plans.  Sometimes just the thought of having to shower and get dressed in order to go out frustrates me because I know that in itself will probably make me sick to the point where I can't go out.
• Memory impairment in patients may cause them to interrupt to say what they think because if they don't, they will forget it.  If these interruptions are distracting, ask the patient to jot down notes during the conversation.  OHMYGOSH YES!!  This is one of the most annoying things that I have to deal with.  It seems like every time I open my mouth to speak I either loose my train of thought half way through the sentence and can't recall what I was talking about or I can't recall words that I am trying to say.  Just ask Nick...He finishes all of my sentences and has to remind me what we are talking about at least 5 times during our conversations.
• Avoid making well-intentioned comments such as "I know how you feel" or "I get tired often too".  Healthy people obviously experience some symptoms of CFIDS from time to time, although not as frequently and severely as patients do. These statements may be perceived as insensitive and hurtful, potentially damaging closeness and trust.  This one is also true.  Many people try to tell me things that they do when they are tired, but none of those things will help me.  This is not normal exhaustion, and I have to do things differently than "normal" people.  If I ask for advice, feel free to tell me what you think, but don't be upset if I don't follow it.  
• CFIDS is not a logical illness.  Understand that a patient may be fine to participate in an activity one minute and feel really sick the next minute.  Respect the need of the patient to prioritize, rest, and discontinue any activity at the first hint of fatigue or other symptoms.  Definitely.  This happens a lot.  I can be perfectly fine, go grocery shopping, and in the middle of getting groceries feel so sick like I'm going to collapse or faint.  Simply walking up a flight of stairs can make me go from feeling great to the point where my whole body shakes and I have to lay down. It is not fun.  I can also feel like I have a lot of energy for hanging out with friends but 5 minutes later be completely exhausted and need to go home.  Because of this, it is hard for me to answer when you ask me how I am feeling.  More than likely in that day alone I have gone back and forth from feeling ok to be up to needing to sit or lay down.
• When you are unsure about what would be helpful, ask! You are not expected to be a mind reader, and giving unwanted help or advice may cause resentment.  Don't be shy or worried that you will say something wrong.  I would rather you ask me your questions than just do something that makes it worse for me when you thought it would help me.  I will also be honest and let you know when I do need something.  When you ask me if you can do something for me, it is hard for me to think about things that I need.  It would be easier on me if you asked specifics such as "Can I do your grocery shopping" or "Can I clean something for you".

These are the main things that most people have wondered about or I think people need to understand.  I'm sure I will think of more as time goes by, but for now these are the most important.  Feel free to ask me anything, but don't be upset if it takes me a few minutes to think of an answer.  I am so grateful for the friends and family members that care so much and want to help as much as possible.  I have been very blessed.  Check back tomorrow for my list of positives and negatives!