• What it is like to return to work after a stroke and the issues I & other SS encountered.
Stroke Background
• Stroke survivor, I had my stroke over 8 years ago; I was 41. I had none of the risk factors associated with stroke such as hypertension or smoking.
• Initially when I had my Stroke I was aphasic, I also had hemiplegia of my right arm, and had lost the vision in my right eye, but very shortly after I was admitted to the Emergency Department my symptoms resolved; although I did have word finding problems.
• Left Middle Cerebral Artery stroke, my Internal Carotid Artery was totally occluded and it was thought that this was most likely due to a Carotid Artery Dissection.
• TIA’s, expressive speech and word finding was progressively getting worse.
• angiogram result said that that the blood flowed through a “tortuous thin corkscrew-like” recanalised Internal Carotid Artery, this periodically causes turbulent flow that feels like a “whoosh” up into my head. just hold my breath and wait for things to settle. I think of myself as “Neurologically challenged”.
• After discharged had a few months of speech therapy which really helped with my word finding problems, the most helpful suggestion from the Speech therapist was not to struggle with finding a word but to pick a word that was close and this would usually be okay,
• I do this more often than I realize, because one day at work I was having a conversation with a colleague and whilst I was talking he had this “odd” look on his face and I thought to myself “Oh! That was not quite close enough”.
• Word finding moment retrospectively…posthumously!
• Speech has become my area of weakness, when I am fatigued my word finding is affected, worse when I become upset I now have great difficulty getting my words out I almost become incoherent thankfully this doesn’t happen very often.
• On days when I’m tired or when words just aren’t coming out right; I have often seen someone looking at me like I have two heads. There are days when I feel like telling people the reason for this and there are days when I think “it’s not my problem”.
• My mental attitude was going to make or break the situation. and I wanted to focus on getting better and returning to work.
• After my stroke I was off work for seven months
• I then returned to work part time; I initially thought that I would be able to resume full time work; but that hasn’t been the case.
• The periodic episodes of carotid turbulence that occur and the effects of post stroke fatigue; which at times can be mind numbing to say the least; has made me realize that it is okay not to work full time and that I don’t have to feel guilty about it.
• Often when people find out that I have had a stroke they will frequently make the comment on how well I have recovered, which is true! And I have a lot to be thankful for. However because I don’t have any obvious disability they assume that every thing is okay! Assumptions can be very wrong.
• If people have an expectation that you are “fully recovered”; it makes it more difficult to cope with the hidden problems
• Like slower thought processes, issues with memory, word finding and communication difficulties, headaches and fatigue, And for me not to mention the effects of my occasional turbulent “Whooshes”.
• My professional background is I am a Registered Nurse and for the past 17 years have worked with the Government Disability Service now called DADHC,
• prior to the stroke I was a Team Leader and my role also included working as a Community Worker providing case management to clients with an intellectual disability living in the community and their families.
• Prior frequently acted into middle management positions; often for long periods of time.
• Daunting returning to work after my stroke knowing that I had those “hidden problems” and I looked okay.
• The department has been very good to me, but I knew I would still be expected to perform as I had in the past, it can be hard to live up to expectations that you may not be able to meet. And I’ve got to say I have had difficulty in living up to some people’s expectation of me.
• One of my roles in the department required me to review Psychological reports so I was used to reading this type of information. Two years after my stroke I had a Neuro Psych assessment. Prior to the assessment I had already identified the areas that I now had trouble with and had developed my own strategies for coping. When I read the clinical observations of my post stroke level of functioning I recollect feeling “crushed”, I sat with a work colleague who is a good friend reading the report and remember saying “I used to be so much better than this!!”. It is a lot harder seeing things written down in black and white.
• My career was very important too me, I am not married and I don’t have children; so to have my career suddenly and drastically altered has taken some adjustment. After the stroke I had to cease working as a Team Leader and relieving in management positions.
• I gained a great deal of satisfaction from my work and I do miss not having the same level of involvement or job prospects.
• Overall I think that I have dealt with the changes pretty well; but I look at the job opportunities in management that I was once able to do and know that now I just can’t do them.
• People at work who knew me before the stroke often assume that I’m back to normal.
• Since the stroke my ability to concentrate has been significantly affected; which makes it more difficult staying on task; this is made worse when I am feeling exhausted and fatigued; it took me quite some time to come to terms with post stroke fatigue and the level of impact it has had. So many people I know who have had a Stroke talk about how fatigue just stops them in their tracks; it’s like hitting a brick wall.
• Since the stroke I know that my level of comprehension has been affected, and sometimes I have difficulty understanding simple things that others just expect me to grasp, I am now slower in processing information and need more time to absorb things;
• my memory is not as good as it used to be; I now need to constantly make reminder notes of the things I need to do.
• I really resist taking minutes in meetings, I find it just too hard staying on track and being able to record what is said at the same time, I avoid doing this at all costs; and I have never explained this to my work colleagues as I don’t want to look like I’m making excuses!
• I also now have problems with remembering people’s names, it can take quite some time for a persons name to sink in, this can be an issue as I work in an office with 70 people (Nemo).
• Government department’s have their timeframes, outcome measures and deadlines, I am aware that I am much slower than I used to be, and I feel that at times I struggle to keep up with the pace and pressures at work.
• There have been many times when management are “rattling” off the details of something they would like me to attend too, such as an immediate response to a client situation I literally have to hold my hand up and say “just hang on a minute, I need to go grab a piece of paper so that I can write it all down”. It takes a fair degree of confidence to do this with your managers, and I know that not all stroke survivors would be able to do this in their work place.
• It took me a number of years working part time before I really accepted that I was never going to get back to full time work
• There are a number of reasons for this, my work generally entails a high degree of stress, I constantly see my work colleagues under increasing pressure and working in an environment of extreme demands.
• It is frustrating and hard to accept; but I have to put things into perspective and recognize that the days of me being able to juggle high work demands and high stress are a thing of the past.
• I have been able to gather details of the numbers of WAGS stroke survivors who have been able to return to work and those who haven’t.
WAGS is a Working Age Stroke support group on the Central Coast for people who are 18 to 65, their carers and family members I’m very lucky to be a member of this fantastic support group
• The stroke survivors in WAGS have varying levels of disability; about half of the members in our group have a physical disability; and about half have no apparent or obvious disability, but we all have one thing in common! We have all had a stroke, so can appreciate what each other is going through!
WAGS has 76 active members:
There are 49 stroke survivors and 27 carers
Out of the 49 stroke survivors;
there are 31 men and 18 women.
• Of the 31 men stroke survivors only 2 are currently working, one works on a casual basis.
• And of the 18 women stroke survivors 6 are currently working, most of them are working part time.
So as you can see out of the 49 stroke survivors there are only a small number of people who are currently working.
(Shauna)
This is a lady from our group; she was 44 years old when she had her stroke. Prior to the stroke she worked as an Executive Assistant and considered herself to be a high achiever. She has no obvious disability and has only been able to return to work part time, she stated that her biggest problem is processing information and being able to concentrate, this causes significant issues in many facets of her job; the hardest thing is she now can’t put in 110% at work like she used too. Being able to filter peripheral noise has become more difficult, if she is in a meeting and there is more than one person talking; she said it is almost impossible to decipher what is being said. Fatigue is also another major factor that has impacted on her return to work; her comment was that “it is hard because when you still have obligations like caring for a teenager or going to work you do just try to push on”.
• All of the stroke survivors that I know who have returned to work have said they definitely can’t do what they used be able to do at work, that in itself is a major adjustment to deal with.
• Sometimes returning to work is not successful despite giving it your best shot.
(John)
A fellow stroke survivor said that it was not his physical disability that impacted on him when he returned to work; he had previously worked in upper management and said that
when he returned to work he was still required to make high level decisions and that he was unable to “cognitively” work under this level of pressure. Fatigue was also another factor in him not being able to manage at work. He said that he had CRS involvement with his return to work and this was one of the reasons he was able to accept his limitations.
(Stats)
Of the stroke survivors that I know who have returned to work; many have no apparent or obvious disability, which has made me think about the statistics commonly quoted that one third of people who have a stroke will die, one third will be left with a disability and one third will recover.
• What does “recover” mean? Does it mean that the stroke survivor resumes their pre-stroke life? The Oxford dictionary defines “recover” as a “return to health or normal state”.
• Whilst I am very fortunate not to have any physical disability, I could not say I am back to my former “normal state”.
• There have been a number of occasions when I have been in conversations with other stroke survivors who also don’t have an obvious disability; and they have said there are times when they would like to “use a walking stick; so that they have something to show to make other people realize that everything is not okay”.
• As I said before I have frequently had the comment on how well I had “recovered”, I have had this type of comment from relatives, friends, work colleagues and health professionals, and I know they mean well !! I do realize that these comments are made because they don’t understand and can’t see anything physically wrong with me.
• The assumption that a stroke survivor is “fully recovered” may result in them attempting to live up to unrealistic expectations and despite their best efforts may still fall short.
• This can cause undue stress and may make them feel like they are inadequate and that their deficits are of no significance or importance.
• Having a stroke has certainly changed my life and made me re-evaluate what is important; I have had to look at what is realistic for me in relation to working and I have made some major adjustments. Continuing to work is more than just a financial decision; I feel it is important for me to keep my brain as active as I possibly can.