For those working when CIDP presented, can you share any details on the outcome/current status? Such as:
Did you continue working in the same field and if so, can you share your field?
If not, did you switch careers to something more suitable? If so, can you share what field and how you handled disclosure during the job seeking process?
If you stayed in your position, did you request accommodations and if so, can you tell us more? e.g. what accommodations were the most beneficial?
Did you stop working and if so, what options were available to you from an insurance perspective?
(I am mid-career and depending on my insurance as my husband is an entrepreneur. I receive monthly in home IVIG treatments.)
Did you seek any counsel or support on decision making?
I had a pretty good turnaround from my initial onset last year, but now, am going through a post-surgery setback. I need to either request accommodations (again and in a modified form) or make serious changes. I don’t feel like I have a good grasp of my options & what is working for others. It is challenging to ask for accommodations when you can’t predict what you will or will not be able to do in the near future.
I am newly diagnosed and so far have continued to work (as a secretary) and my work has been willing to work with me on time off and if I need to clock out and go rest then come back. I have had the same concerns as you. As this has progressed and the really bad days hit where it's hard to move around I have also worried about what to do and how long I can continue working. Right now I am trying to take it day by day and keep my boss informed of what's going on and any needs or accommodations I need as they come (or change). I have to keep working as long as I can due to financial needs and also due to my insurance is through my job. So while i can't provide an answer know your not alone and I'll let you know if I come up with a solution :)
Lots of questions in here, but don't we all have lots of questions.
I am still working in a sales management position. I'm in a relatively mild period and most days I can perform all of my job requirements. I'm concerned about when the weather turns warm as warm weather seems to be more difficult for me. As long as the accommodations you are asking for are for physical limitations, I think you should be fine. There are federal laws that prevent this request from being used against you in a negative way. If you are talking about accommodation related to the impact CIDP can have on mental capacity (I have short-term memory issues) I would be certain you understand if your company provides you with a long-term disability policy. Most of these policies use a definition of like or similar jobs as their definition of disability. This prevents cancelation of benefits if a person can't perform like type work. It wouldn't be fair to remove benefits for an executive who could now only work in a mail room. Assuming you live in the US, you also need to be familiar with the Family Medical Leave Act (FMLA). FMLA provides protection of you job when medical issues impact your ability to work. I've filed for intermitted leave because most days I can work well enough to do my job.
Hope this information has helped, please let me know if I can help in other ways or guide you to more information on anything I've said.
It is good to know others are working through it too and having some success. I took a short leave last year after the diagnosis came through. I will review my corresponding FMLA paperwork. Because its unpredictable, I don't feel like I am dependable on my commitments. I do my best with what I have to work with. It is not on a daily basis that I fall short, but in times like now, where I am relapsing. I had a long run where I was progressively improving. I could have anticipated that my surgery would irritate my situation, but I was in such a good place with the IVIG improvements that I was too optimistic. I am not the only one that is optimistic about my particular capabilities to fulfill expectations. My employer sees me walking, but trying to explain that driving 3 hours in the car each day and my internal healing process from surgery is taking everything I have and weakening me, is very hard. Before the leave, I proved that working remote was feasible to accomplish my tasks and may need some remote days until I can get over the hump. I am confident that won't impact my work progress. I've been lucky that a contractor friend is temporarily making the journey past my office and have arranged rides until the supplemental IVIG can be approved (and hopefully kick in). It is really is a day by day thing. Some kind of broader expectation setting (FMLA) or agreement of accommodation when I am symptomatic would be great. It would be good if I could outline the requirements where I may fall short of my commitment if I am in a relapse phase as I am in now. I respect that they have responsibilities and need some reliability.
I suffered both sensory and motor damage this made it impossible to continue in my line of work. Meds create cognitive issues for me. I wound up after almost a 18months on SSD and drawing my pension. I tire quickly and overheat . My body no longer senses temperature and I struggle to just get by sometimes. One day I can walk fine the next I fall without my cane and when I over exhausted roll out my wheel chair for the next few days.
I am really sorry you have went through so much. This disease is so unpredictable. It is an emotional adjustment to go from something you were good at, to not being able to do it consistently or at all. Thinking of you!
I am feeling better too. My surgery is healing well according to my doctor and I am almost around the major hump. I think this is directly connected with the relapse I had with the CIDP. I have an IVIG treatment today and so I am hopeful to be back on track soon.
roland said:
Did you continue working in the same field and if so, can you share your field?
Yes, I work as a programmer.
If you stayed in your position, did you request accommodations and if so, can you tell us more? e.g. what accommodations were the most beneficial?
The only thing I told them was that every six weeks I'd be out for two days to get my infusion.
Did you seek any counsel or support on decision making?